| Is there hope after a poor prenatal diagnosis? |
| You have just been handed the most devastating news...something is wrong with your baby. All the hopes and dreams that you have invisioned for your child, have been altered by this terrible news. The pain and disappointment are heavy on your heart. You've been given a poor prenatal diagnosis, now what? If you are considering terminating your pregnancy, I urge you to investigate the condition that your unborn child has been diagnosed with, read the true stories on this page from women who were given a poor prenatal diagnosis, and meet their children. |
| I am married to a wonderful man! My husband and I don't have any kids together, but we have two daughters. My oldest daughter is my husband's from a relationship that ended long before we ever met. While we were in college, I began caring for his daughter while he would work. After 7 years of close friendship, we got married. Our youngest daughter is adopted. My husband and I have been trying to conceive our first child together for over 3 years. I have a condition called Polycystic Ovary Syndrome, which has caused my infertility. I have known for several years that I might never be able to have children of my own. This has been a very difficult and painful issue in my life. In March, we were approached by a family member who asked us to adopt her baby girl. Kaydie was born with Down syndrome and her birthmother didn't feel she was prepared to care for a child with special needs, as she is single and already had one child. There was a lot of pressure to terminate the pregnancy due to the diagnosis of Down syndrome. I was touched by the strength of her love for this baby that wouldn't allow her to cave to the recommendations of the doctors and geneticist. Like all mothers, I was afraid that a sister with a disability might become a burden for Lydia. She has prayed and asked for a baby brother or sister for as long as I have known her. We asked her if she would want a special needs sister. She gave me a look like I was insane and said that of course she would love any sister. We brought Kaydence Olivia home on Mother's day this year. She has been such an amazing blessing to our family! When we first brought Kaydie home, she was underfed and was fairly behind in her development for her age. She quickly began gaining weight and getting stronger. Kaydie is doing very well, now. I had heard that having a child with Down syndrome was like a secret family that most people have never heard of. This statement is so true! Lydia and Kaydie are so close. Many people have even said they look alike. Lydia is a second mommy to Kaydie and says she can't remember what we did for fun before we had Kaydie. Kaydie loves her sister, and chooses Lydia over Mommy, on occasion. I have always had a love for disabled children, but never imagined that I would be given this amazing opportunity! It is not always rosey, but no one's life is ever perfect all the time. Having Kaydie has taught me what love truly is! I no longer take my older daughter's growth and development into a young lady for granted. I no longer rush through life and miss what's important. I stop to take pleasure in the small things, like the day my daughter held her head up on her own or the first time she sat up unassisted! As we were working through the process of deciding to bring Kaydie home, I was concerned that it would be somehow harder to raise a baby with a disability. I was afraid that I would fail and that she wouldn't thrive. Kaydence has proven me wrong over and over! She is just like any other child! She has a stubbornness that seems to mirror my own. She likes her bottles and hates having her face cleaned after she eats. She fights sleep at bed time, and wakes up with a smile and a kiss for her mommy. She plays with her favorite toys and protests when it is time to pick up the mess. She loves her bathtime, too. As you can see, my baby may have been born with a bonus chromozome, but she is as normal as you and I are. Having a child with Down syndrome brings you more joy and love than you could ever think possible! Kari Jones Wichita, Kansas USA KAYDIE'S PAGE |
| At our 22 week apt, the ultrasonographer found something disturbing. I had no idea that she was hiding something from me while we chit-chatted how the summer had been so far. I was stunned when the ob came back into the exam room and told us that they couldn't find all four chambers of our baby's heart. I don't think she had delivered very many bad results to parents, because she did a horrible job of it and somehow managed to snuff out any possibility of hope that my husband or I might have harbored. She said, "incompatible with life" several times. She said that we could terminate, sign up for a transplant, let the baby die after birth, or find out if my daughter's condition would be operable. She then referred us to a high-risk ob. At week 23, the high-risk ob looked at out baby's heart and told us that she had HLHS (hypo-plastic left heart syndrome). Essentially, she had half of a working heart as well as other problems. He told us we could terminate, let the baby die after birth, or find out if any of her defects might preclude a series of operations that would make her heart function with one ventricle. We wanted to know more, so he then referred us to a pediatric cardiologist. Termination would not have ever been an option for us . . .but if it had been, there would have only been one remaining week to make the decision and go through with it. We would not have received the much more positive news that the pediatric cardiologist offered us that next week. We discovered that our daugher did not have HLHS, but in fact did have seven complex serious heart defects. The high-risk ob had not even identified the correct ventricle as being hypo-plastic because it was her right ventricle that had failed to develop. Her heart had also been malformed because of a Transposition of the Great Arteries, a Coarctation of the Aorta, a badly formed tricupic valve, and two holes (asd and vsd). Another cardiologist later explained that "she has a seriously messed up heart". Despite all of this, when the cardiologists understood that we were going to opt for agressive treatment, they plotted out a course for surgeries that would not only save her life, but, they predicted, would give her a very close to normal life. For the first time in two weeks, we actually started to believe that our baby just might make it beyond the nine months I would carry her. Even with hopeful news, I cried throughout the rest of my pregnancy. I knew that while I carried her, she was safe, her little heart wouldn't have to work for her. When I went into labor, the experience was bitter-sweet. I was overjoyed to see her (I only got to hold her once in 21 days) . . .but terrified about losing her during the surgery, or afterwards due to complications. My daugher is now almost six months old. She has had two heart catheterizations and an open heart surgery that is called the "Norwood", named after the dr who developed it to save babies who have only one working ventricle. There are two more surgeries coming up for my daughter in the next two years. What is life like with a child who has serious heart defects? Well--it is a bit of a rollercoaster at first. But now, even at only six months, I have a lot more confidence in myself and about what I can handle. I do get depressed because I want her to be healthy, I want her to have a normal heart. But in terms of *her* quality of life, she is happy and thriving. She plays in her saucer. She eats cereal. She beams at her brother. The only struggles we have had so far all revolve around getting her to eat enough to gain weight. This is a common problem for heart babies--even with less severe defects. She is off the charts now in terms of her weight--but she is still growing, it hasn't stunted her skeletal growth, so the drs are not overly concerened. There are lot of dr appts. She sees her cardiologist every three weeks in addition to the normal pediatrician visits. She receives RSV shots and we do not take her out to any crowded stores or so far, any big family gatherings. We are being extra cautious to that she will be healthy for her next surgery coming up in May. The drs have told us, even reprimanded us, that we need to treat her like any other child . . .and that is where we are a little bit weak. Of course, Celine's story is not over . . .we have two more surgeries to get through and an overly-anxious mother (me) who needs to be subdued. But so far, we are all very happy with where we are right now. I hope that our story will help you to cope with a poor prenatal diagnosis that includes heart defects. Please feel free to email me if you have any questions or just want to talk about what it's like to parent such a child. . . and won't you visit Celine's page? CELINE'S WEBSITE Recommended Reading- An article about a couple who learn their unborn child has an abnormaility. Sincerely, Monica |
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I have a son with spina bifida and could not imagine life without him. We were told to terminate at 22 weeks and refused then told that he would die before he was born anyway (at 26-28 weeks) we still refused. We were told that he was severe (because his sack was so large and his spinal cord was in the sack) and that if he survived he would never walk, have control of his bowels, and be severely mentally retarded. We still refused. He is our 4th son and we said that we could handle whatever God gave us, so we prayed and asked everyone that we met to pray for us. When he was born (at 36 weeks) He had a sack on his back that was the same size as his head (I have pictures). But he was beautiful to me. He was kicking his little legs like a champ, but we were still told that when they do the surgery to put his spinal cord back inside the could still become paralyzed so not to get too excited. Other than the sack he was perfect. When they did the surgery, they found that his spinal cord was not in the sack only fluid. We were then told that he would walk but would have an 80% chance of needing a shunt because the fluid would back up into his brain.... that never happened. He is almost 3 months old and all of the Dr.s are amazed that he is perfect except for a thin scar on his back. I wish that there was a board that women could go to before they terminate, I wonder everyday how many perfect babies are terminated because of a Dr's advice. I kept telling people that God can do miracles and he did. Hazel wife to Paul, mom to Matt , Chris, Jacob and my miracle baby Andrew!!! |
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| Down Syndrome |
| I had my first ultrasound when I was 6 months pregnant. I had looked forward to this day my whole pregnancy. This was going to be the day I would see my baby! And this would be the day I discovered the sex of my child. As the Sonographer was doing the ultrasound, I noticed him acting strangly. I asked him if something was wrong with my baby. He said he couldn't answer that question, that my doctor would have to give me the results. He did tell me that my baby was a boy, and sent me home with photos. I was a nervous wreck that week-end, as I waited for Monday to roll around. On Monday the phone call came. I was told that my baby had abnormalies to the brain. I fell to my knees and cried. Right away the doctors began to suggest that I terminate the pregnancy. I was told that my son had Hydrocephalus("water on the brain.") And that he would be retarded. The doctors explained that the best thing for me and my baby would be to terminate the pregnancy. Terminate? I didn't even realize that an abortion could be performed that late in pregnancy. But the doctors were quick to tell me that in cases like mine, an abortion could still be an option for me. I loved my son with all my heart, and I would continue to love him no matter what condition he was diagnosed with. It bothered me to see doctor's want to end my child's life. I found doctors who supported my desire to carry to term. And from that point on my son's best interest was considered. Treatment options were discussed. And it was agreed that labor would be induced at 32 weeks, and my baby would be shunted. I had to drive 2 hours to the hospital where my son was to be delivered(one of the best hospitals in the world.) I gave birth to an awesome little boy who weighed 4 lbs 9oz. After he had been examind the doctors decided that he didn't need to be shunted after all. Now lets fast foward to today....My son Dylan is 9 years old, and he has NO developmental delays. He is a perfectly normal little boy. He does still have "moderate" Hydrocephalus, however it has not effected him in any way. A doctor may be able to diagnose a condition, but chances are, he can't tell you for certain how that condition will effect your child. I know that not all stories turn out like mine. Some children are born with very real medical problems. I would like to encourage women to see that these children are still able to lead happy lives and make an impact on the people around them. There is so much help available, fetal surgery and procedures, financial assistance, and support groups for parents of disabled children. Shellie |
| Hydrocephalus |
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| Fetal Treament facilities- Surgery and Procedures |
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| Heart Defect |
| Kaydie |
| Celine |
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| Dylan |
| My name is Michelle. I am a 33 yr old mom from Maine. I have 3 living children. I had a daughter in jan 1989, her dad walked out on me when I was pregnant, telling me to get an abortion or get out of his life. I was terrified, I almost considered it, I was very lucky that the place I went to for my pregnancy test was a crisis pregnancy center. They gave me a little pair of knitted booties, baby blue, something tangible to hold onto while awaiting the birth of this very unplanned child. Her dad did leave, and has never seen her. My fiancee has raised her since birth. It was a trying time, but I think it was preparation for the future. As it turned out, having Kristin was the easy part. For 7 years after her birth, my fiancee and I tried to have a baby. It just wasnt happening. I started college, determined to make up for the rotten childhood I had had. My daughter was the entire focus of our lives. It seemed she would be the one and only. Months after starting college, I discovered much to my happiness, that I was pregnant! I had gut wrenching morning sickness, but happily put up with whatever it took to have my beautiful son. he was born in Sept of 95, blonde and curly and fair. We named him Jesse, and he filled a hole we hadnt known we had. We settled into life, thinking our world was complete. When Jesse was about a year old, we got a call. Our little nephew was in a foster home and needed a place to call his own. he was supposedly healthy. We applied for our foster license, and when he was 8 months old, the day before Jims birthday, we brought him home. He would become our second son. He was a sweet natured, beautiful baby. But within days, at his first pediatric checkup here, he was diagnosed with cerebral palsy. I thought I can handle that, and so we moved forward yet again, a little bigger, a few more appointments, but happy nonetheless. When Alex had been here just 7 weeks, I discovered I was unexpectedly pregnant, AGAIN. It was quite a shock, from 1 to 4 children in about a year and a half. Our daughter kristin was learning to share our time and attention in a big way. Again, we said we can handle it, and moved forward. We had great hopes that the new baby would be a girl, 2 of each sounded perfect to we who had thought we would never have more than one. My best friend in elementary school had had a child with Down syndrome, so I never believed it could happen to us. The odds had to be extremely high. I was wrong. I was sitting in a hospital room with Jesse, who had been admitted the day after alex had gone home for the very same thing...rotovirus....when I got a message from home..call your doc. I was exhausted, I had been a week in the hospital already, and facing yet another with my very sick little boy. I called the doc, expecting a reminder that in all the craziness of my schedule lately, I had missed an appointment. He informed me that my AFP test had come back indicative of DS. I was shocked to hear the words. They asked me to come on up to the L&D floor to do a level II ultrasound, to look for markers that would give us a better idea. jim and i arranged for someone to stay with all the kids, and up we went, expecting this huge mistake to be clarified and to go home to our growing brood happily free of this new worry. The doctor, Dr Bowley, did a very indepth exam, he looked for all the markers that might indicate DS. when all he could find were shortened femur bones, I looked to the side of the bed at her little bow-legged frenchman daddy and giggled. HIS legs were pretty short too. There were no other markers. But, the AFP had been so low that the doc wanted to do an amnio right away. We knew that no matter what it said, we wouldnt abort. So, we went on with the business of raising the kids, and adding on to our house in preparation for the new baby to come. We now knew it was a little girl. On june 27th, 1998, I went into labor suddenly at home. I told Jim, and we figured we had awhile. The other two were big babies, they were well over 20 hours labor each. I called the sitter, double checked my bag, made sure the BIG pink clothes were in the bag, and grabbed my camera bag. There was no film, so I told Jim we ought to go shopping before we went to the hospital. we stopped by radio shack. I stayed in the car while he ran in. Then on to buy a new nightgown. I went in for this one. As I browsed the racks, the pains started coming hard and fast. We hurried out of the store and to the hospital. Jim walked me upstairs and settled me in, then went to park the car. By the time he returned, I was in hard labor. 12 minutes after getting to the hospital, our baby girl was born. 6 lbs 7 oz and not breathing real well. They took her to the warming table and started working on her. I wasnt terribly concerned, she was breathing. I was a bit worried. After what seemed an eternity, they finally brought her over to show me. They laid her on my stomach, and she raised her head. The very second she looked at me, I knew. I said right away..."What are the chances this baby has DS?" they all acted like they were shocked I would say that, then i reminded them of the AFP and Dr Bowley. She was whisked away immediately. all the nurses kept telling me not to worry, she was fine. They all thought she didnt have DS, she had none of the usual features, except the slanted eyes. I knew though. I knew from the minute I saw her. And what once would have devastated me somehow changed me. This was MY baby, not some "retarded child" I was seeing on tv. The things I had thought about my friends baby came back o haunt me. I knew I had better strat learning, and fast. 9 days later, i took my baby girl home from the hospital. I told everyone who would listen about the DS. I was so proud of this child, I actually surprised myself. It took a few weeks for me to stop seeing the DS before I saw HER....but eventually it lost its novelty. I still sometimes see these subtle features and think this is most certainly the most beautiful face on earth. My prejudice gets the better of me sometimes, I just cant see anything about Ciarra as a negative. I know my soul is different for having her. I am more open, more spiritual, more in tune with life. My kids adore this baby sister who is almost 4 now. My roguh tough little Jesse boy has never struggled with his sisters differences. My oldest daughter is 13 now. I go to her school and I immediately lose the baby to her friends. Ciarra is a popular little girl. She attends a regular preschool program, potty trained before she was 3, and is a very independent little kid. She is funny and spirited, stubborn and witty. she can whistle already and whistles little songs all day long. She idolizes her big brother. She loves to draw, and at 3 can put all the details into a drawing of a face, she is rather amazing, but then she is mine so I see her with a touch pf prejudice. Our foster son Alex lived with us for 3 years. he was placed for adoption on sept 11 2000. On sept 25th, 2000, he was murdered by his adoptive father. It was the worst time of our lives. There was so much guilt for not having adopted him ourselves. Rarely does a day go by I dont hear his funny little laugh and miss him with everything I have in me. Ciarra loved him so, and he her. I believe alex prepared me for Ciarra. he taught me alot about unconditional love. As tough a kid as he was, I miss him so much. I feel like Ciarra has changed me so much. I sure have sloed down to enjoy the world more. She is perpetually hopeful, and most often smiling. She lives for barney videos She is the closest thing to an angel as I will ever see. Through her, i have started an online support group. We are a close knit community. Several of our members are moms I tried to lend a little hope to when I found them shortly after their diagnosis. Ciarra is helping me to make a difference in this world. I hope my story helps even one family to think about continuing a pregnancy with a DS diagnosis. This thing I once so feared I am so at ease with now. I wouldnt change this little girl if I had the magic pill today. Im honored to be her mom. CIARRA'S PAGE Michelle |
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| Down Syndrome |
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| My name is Tina Prather. Im 38 years old and I have 3 daughters. I have a 17 year and 15 year old. I also have a 7 month old. I have Melissa, Melanie and my newest addition is Mykenzea. when I was about 4 months pregnant I had an amino done. Of course, after an amino you have to wait a few days for the results. I wasn't too worried because there has never been any problems in pregnancy in my family. The results came back and the genetic counselor said she needed to see me and my husband because there was a problem with the test. Of course, we were very scared. The counselors said my baby had ring 22. Since neither me or my husband ever heard of this they tried to explain it the best they could. Im still not sure how well I understand it. They explained that my baby has all her chromosome but chromosome 22 is in the shape of a ring which means there is a piece missing. Not sure how much is missing. Most cases of ring 22 the children have severe mental and/or physical problems. The counselors let us know of our option to terminate. The counselors said they could do some chromosome testing on us. If one of us have ring 22 it could be a hereditary trait. But they said they doubted that because ring 22 is not something that is usually hereditary. They did the tests on us and we had to wait almost a week for the results. I was an emotional wreck. I couldn't imagine terminating my little girl. I was already so much in love with her. After a week the results came back. My husband was negative and much to everyone's surprise I have ring 22. The counselors said this makes them feel little better but there was no guarantees. There is no way of knowing how much of chromsome is missing. They still gave us the option of terminating. Me and my husband both decided we would have our little girl and love her no matter what. Mykenzea was taken by C section at 34 weeks. She was born at 5lb 4oz. She was given a blood transfusion and spent two weeks in the NICU which had nothing to do with the ring 22. she was given the normal mental tests at birth and everything seem normal. of course, how much can you tell about mental state at such an early age. So far, at 7 months she has met all her milestones. Probably a little advance since she was a preemie. My little girl is a beautiful and I love her very much. Im not for sure what the future holds for her. Im currently posting on a board for parents with children w/ring 22. Children have all been diagnosed at different ages. Some at 6 months and then other at 18 months. Most seem to have mental disadvantages and all seem to have speech development problems. In my heart I feel Mykenzea is fine. She laughs and smiles often and she is a joy to our lives. No matter what happens in the future I will never regretting bringing my little girl into this world. Me and my husband have a theory. Don't know how off base this is. When you think about it, chromosome testing isn't a normal procedure. People don't go around getting their chromosomes tested. So who is to say how many of us have some sort of chromosome defect, in fact im sure we all do. None of us are perfect. We have toes larger than others, crooked fingers, droopy eye, etc. we are all special and unique in are own way. I hope my story has helped someone. If you get scary tests results and don't know what to do. Please go with your heart. Remember everyone is special. Tina |
| photo coming soon |
| Nick Kersh, age 10 In 1992, I discovered I was pregnant with my son, Nicholas. His father (now divorced) and I had been married for a couple of years by this time. Actually, we were not planning on having children at this time when I discovered I was pregnant. I remember waiting in the doctor's office for my pregnancy results and for the first time realizing how much I wanted to be pregnant. The nurse called me in for the results and I was so nervous, again realizing how much I wanted this baby that may or not be. The nurse confirmed my pregnancy and all I could do was stand there. If I moved, I felt I would fall right over! I was so excited that my head was nearly swimming! My pregnancy was uneventful if that can be said. Of course I had morning sickness that didn't occur just in the morning and my feet swelled horribly. But again, probally just typical pregnancy related issues. During my 7th month, my doctor, Dr. Sutherland agreed to perform a sonogram to check on my baby and tell me whether or not I was going to have a boy or girl. I so much wanted a little boy. I dreamed of cute little jeans and t-shirts, trucking all over the floor and all that good stuff. It was confirmed, much to my delight that I would be having a boy! However, during the sonogram a mass was discovered on my son's back. I was sent to a specialist for further testing and I was told by the radiologist that it was just a cyst. This worried me, but I was told and reassured that this could be removed at birth with no problems. I was sent home and told not to worry. I did worry of course. However, I decided I wouldn't spend the rest of my pregnancy worrying about spent the rest of my time enjoying watching my son move around in my belly! What an experience that is I tell you! On May 31st I went into labor. That morning I had a "feeling" that I would be having the baby soon. I just had a feeling. I was beginning to feel uncomfortable but nothing out of the ordinary by that time. Later that evening my back began to hurt more and more, nothing serious, just uncomfortable. I went to bed and couldn't sleep, decided to walk around thinking that may help, but it only seemed to aggravate the pain in my back. Well I called my doctor who suggested that I go to the hospital. By the time I went to the hospital I had been in labor for nearly 20 hours. Wouldn't that be great if labor was also that easy. I remember laying on the bed in the hospital telling the nurse that if it wasn't for my backache I would feel pretty good. The doctor came in later and said that I would be having the baby soon and because of the supposed cyst on my son's back I had a choice of whether or not to have a vaginal delivery or c-section. I decided to have a c-section. When I awoke in recovery I was told my son was okay and I was okay. However, as I was being wheeled from recovery to my room a doctor came up beside the bed in the hallway of all places telling me that my son had spina bifida myelomeningocele. I don't think I had ever heard those words before and I didn't understand what he was telling me. He began to tell me that my son would not walk and would have many many other health related problems. Needless to say I was a sight in the hallway of the maternity ward! I was nearly hysterical by his words! His prediction of my son's future was so black and dismal. My son, Nick was in NICU for a total of three months. Nick had several surgeries during this time to repair his spine, insert a shunt because he also had hydrocephalus and another shunt revision because the first shunt began to malfunction. After being released from the hospital I visited everyday. I so much wanted Nicholas to know his mom and to know that I loved him very much. I didn't want him feeling all alone in the hospital. It was sad beyond words going home each night without my child. It was almost like I didn't have a baby at all. He wasn't at home with me. Nick finally got to come home at 3 months of age. He had to be handled carefully because he was still recovering from his surgeries and had couldn't be handled on his spine, head or abdomen. I was so nervous taking him home. Again, this was my first child anyway and to top it off he needed special care. However, all went well and I loved him dearly. I held him all the time. I would even sleep with him in my arms, not wanting to let him go! During his infancy and toddler years, we spent alot of time seeing specialists and I was told over and over that he wouldn't walk and so many other things that he just wouldn't be able to do. Well, I just felt that these doctors couldn't possibly "know" what he would do or wouldn't, so I just keep the thought that "we'll see". Nick took his first steps when he was 3 years old. Oh, how proud I was when he would hold my hand and we would walk into the doctor's office! Nick is able to walk, has complete control of his bladder, bowels, can run, dance, and nearly everything else any other kid can do. He does have some limitations but he is a fighter and has met every challenge with his head held high. Nick has had several other surgeries over the years, two of which have been back surgeries, which I don't like to say the least, but he has overcomed it all! He is the most special person I've ever met in my life! I am a better person because of him in so many ways. Nick has a special way about him that attracts so many people. Total strangers as well. It's amazing! He's kind, sweet, humorous, gentle and very tender hearted! He's astounding not despite the fact he has spina bifida, but partly due to the fact that he has spina bifida. That is part of who he is. I have talked to literally thousands of parents in the last couple of years, many facing the fact that their child also will be born with spina bifida and I tell them they are about to embark on one of the most amazing journey's of their lives! Just because they have spina bifida and maybe they will have some limitations, maybe not, but they are amazing people that will shine the light brightly in your life! Many health care providers will and have encouraged mothers of handicapped children to abort these children because of a view that they will have a "less than" quality of life, but I 100% disagree. Besides the fact that we are ALL disabled in some sort of way ourselves, these people bring much joy into many people's lives. I thank God that I didn't have to face such an issue during my pregnancy. I don't personally believe abortion is ever an option and if a mother doesn't want to raise a child with a disability there are many families that welcome these children into their lives all the time. Is it difficult to raise a child with a disability? Of course it is. There are challenges and issues that have to be faced that can and do rip your heart in pieces, but.....is it really easy to raise any child? Of course not! No one, not even a skilled experienced doctor can fortell the future. My son is truly a blessing to me from God. I feel so blessed to have the opportunity to be a part of his life. Nick was born for a reason, he is predestined for a special purpose in his life and again I feel blessed to be his mother! Nick is now 10 and will be a fifth grader next year. He is very active, loves art, is a great big brother to his sister, Tanna. Nick is also an usher with his youth group at church and recently was baptized! Again, I'm so very proud to be his mom! Ashley Kersh-Fletcher OUR CONTINUING JOURNEY WITH SPINA BIFIDA |
| Trisomy 13 Syndrome |
| Our daughter Rebekah was born May 9th, 2002. I was 37 weeks and 2 days into my pregnancy and waiting for my regular check-up with the doctor. My water broke in the waiting room and the journey began. I wasn’t actually in labor so I went home to get my bags and let a few people know what was going on. Scott and I went to the hospital about 5:00 p.m. I was beginning to have a few contractions but nothing consistent so I started walking. By 7:30 to 8:00 I was definitely in labor. Our dear, sweet Rebekah was born at 10:36. She weighed 6 lbs. 1 oz. and was 19 in. long. As Rebekah was being born I could see her little face and noticed that she had a cleft lip and pallet. At that point I knew that something was wrong. I must have seemed noticeably upset because many of the people in the room tried to reassure me that she was OK and that her mouth could be fixed. I however knew that she was not OK…I just knew. Time seemed to stop. Scott’s aunt was Rebekah’s delivery nurse. She had worked that day but decided to stay after her shift was over to take care of our baby when she was born. As she was cleaning her up she kept noticing more and more things beyond her cleft lip and palate that were abnormal. She called in a pediatrician and it was decided that Rebekah would be flown to Kosair children’s hospital. I left our local hospital a little over 12 hours after giving birth to Rebekah. It was just too difficult to stay there. I would hear the babies being brought to their mothers and I didn’t have my baby. I went home to rest; we would make our first trip to Kosair’s in Louisville on Saturday. I had so many questions, so many fears. On Saturday May 11th our worst fears were realized. We met with a geneticist at Kosair’s and he told us that Rebekah has Trisomy 13 syndrome. Trisomy 13 is a chromosome disorder that occurs in approximately 1 in 10,000 babies. The condition is due to having and extra #13 chromosome. We were told that this was a random occurrence and that there was nothing that we did to cause it and nothing that we could have done to prevent it. Even still this diagnosis was heart wrenching. There are multiple birth defects that go along with Trisomy 13 and statistically 95% of these babies don’t survive their first year. Rebekah has almost all of the anomalies that are the markers of this syndrome. She has cleft lip and palate, very small eyes (microphthalmia), hearing loss, location of the heart on the right side of the chest (dextrocardia), as well as a number of less medically significant physical findings. In the first week after her birth I had a very hard time accepting everything. This was by far the worst thing that had ever happened to me. I remember thinking… “I can’t do this.” “How in the world can I handle this?” I also remember Scott saying shortly after Rebekah’s birth that he felt honored that God would think enough of us as parents to bless us with such a special little girl. Why couldn’t I feel that way? I felt hopeless and lost. I was torn between being afraid that Rebekah was going to die and being scared to death that she would live. I felt like I was sinking into a deep, dark, hole. I was traumatized by the fact that she would never open her eyes. I was fixated on the fact that she would never be able to see me, her Mom. We were told that most of these babies don’t hear either so that only made it worse. I felt like she was completely closed off and that she must be suffering. She‘s just a baby, I thought. This isn’t fair. How can something like this happen to a little baby? My mind raced and I wondered how anyone could do this? How do you love, bond, and grow so intimately close to a baby that you know you can’t keep? I thought back to the birth of my last baby. After Luke was born I was going to have my tubes tied. It was never something that I wanted to do but with Luke being our 8th child I felt some pressure to have it done. I got right outside the operating room and I started crying and I couldn’t stop. My doctor came back to the operating room and asked what was wrong. I told him that everything was fine and to just go ahead with the procedure. He said, “No.” He didn’t care how many children we had, if I wasn’t sure about this then he wasn’t doing it and with that he left. Now, I could only think of how I should have had my tubes tied, how that would have been for the best. I look back to those early days after her birth and it seems as if I have come a million miles since then. How did I get here? As I am sitting here trying to find a way to put it into words, all I can think of is simply this. God and prayer. All those questions, all those concerns, wondering how “I” was going to do it. Well, “I” can’t do it…I never could. But, God can! We have had so many people faithfully praying for Rebekah, for me, for our family. That is what has gotten me though the very difficult days. I was able to turn this situation over to God and ask Him to help me through. I still don’t understand why this had to happen to Rebekah but I have been able to accept it. I love her completely. How could I not? I carried her for 9 months and she is my baby girl. I also know now that I was right the first time concerning not having my tubes tied after Luke was born. I should have never questioned that. Rebekah is here for a reason…she is not a mistake. Looking back God was with me, taking care of me and protecting me though the whole pregnancy. Several of the doctors at Kosair’s have asked me if I had an ultrasound with Rebekah. They couldn’t believe that I didn’t know something was wrong before her birth. I did have an ultrasound; as a matter of fact, I had two. I even remember asking about her mouth in specific. Why, I don’t know. I had never asked about something like that with any of the others. Everything appeared normal. The way I see it, it wasn’t for me to know until delivery. I wouldn’t have terminated the pregnancy so I see it as God’s way of protecting me. If I had known, it would have pushed me to do the right thing, even made me question what the right thing was. Another interesting situation that was taken care of was the delivery. Scott travels with his job and was on a project in Rhode Island during my pregnancy with Rebekah. We had discussed the possibility of him not being home for the delivery. I thought that I was OK with that possibility. Suddenly, the day before I had her, I wasn’t OK with it anymore. I called Scott at work and asked him if he could come home. He was slightly annoyed but did ask and they said, “Go…leave tonight if you need to.” He couldn’t get a flight out that night but did leave on the 6:00 a.m. flight the next morning. He was home by noon and here when my water broke. He was able to be with me through every contraction and delivered Rebekah just as he did our last two boys. Normally he wouldn’t have been home until almost midnight and Rebekah was born at 10:36. I would have been all alone for the delivery. Knowing what we know now, I couldn’t imagine Scott not being with me when Rebekah was born. This has been a growing experience, not just for me but for our whole family. I am a stronger person because of it. It has also strengthened my relationship with Jesus. It has taught me not to rely on my own understanding but to have faith. I don’t know how long we will have Rebekah with us but we will love her every day. Beth Eckstein Psalm 62: 5-8 Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. Read A note from Rebekah's Father and view more Photos |
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| Rebekah |
| To see the BEFORE surgery photo place mouse over the above picture |
| Andrew |
| OUR SPECIAL CHILD At a routine ultrasound during the 4th month of my pregnancy, the doctor's asked us if we wanted to know the sex of our baby. We hadn't found out with the other two (one boy, one girl) so we decided to find out with this one so we would know who would be sharing a room with the new baby. "It's a BOY!" the doctor said. Tears of joy flooded my eyes.I had wanted a baby boy so badly. The next thing the doctor said was, "The baby seems to have a hole in his heart". Tears of joy turned to tears of sorrow/fear. "Will it fix itself or will he need surgery", we asked. We were informed that this type of heart defect will not repair itself. We were also told that this type of heart defect was common in Down Syndrome. Another blow. The doctors tried to push amniocentesis on us a few times but we didn't want to risk miscarriage and my philosophy was "Ignorance is bliss". I knew this would be my last pregnancy and I wanted to enjoy it without having the Down Syndrome issue hanging over my head. In April of 2001, our precious boy Peter was born, with a hole in his heart and with Down Syndrome. As the doctor placed this slimy little bundle on my chest, I was flooded by peace and love. "A baby boy! A son!" I was in love. I could tell right away that he had Down Syndrome and I can honestly say, it hardly mattered at all. Peter had trouble sucking from a bottle. The hole in his heart made him tire easily so he was on a feeding tube for the 1st two months of his life.One morning, he pulled it out and we decided to see how he would do without it and he did fine. He had his heart fixed at 10 weeks old and has never looked back. Two nights after I gave birth, God woke me up with a poem and I wrote it down. Here it is: OUR SPECIAL CHILD God blessed us with a special child It's very plain to see, The love and joy that he will bring To our family. He may not learn to read or write Or how to spell his name, It doesn't make a difference though, We love him just the same. We thank the Lord for choosing us To raise this precious child And look forward to each day with him To see his lovely smile. GOD BLESS PETER!! I sent that poem out in all the birth announcements. It really explained exactly how we felt about our little guy! About two months later God gave me another poem. I know it was Him because I am NOT a poet!! LUCKY ME ""I do not mean to brag", I said The day my son was born "But this child is so magical Much more so than the norm". "You see," I said through tears of joy The day I took him home "My son received a special gift, An extra chromosome." "Instead of 46, he has an extra, 47 Thank you God for sending me This bundle straight from Heaven". I look at him in awe each day As I hold him close to me And hope and pray that others too, Can be lucky just like me. Karen |
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| Mykenzea |
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| Peter |
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| I remember the day I found out my son would be different. I was about 17 weeks along and at my first ultrasound appointment. The technologist seemed to be taking a long time to get a good shot of the baby’s spine, but she didn’t make a big deal out of it and kept me busy with small talk. She wasn’t satisfied with her findings and suggested I have a Level II ultrasound “just to get a good look.” The day of the Level II I wasn’t very nervous at all for some reason, I thought that my being a bigger girl was the reason the first technologist couldn’t see everything she needed to. After about 20 minutes, this tech excused herself from the exam room and went to get the perinatologist that was in the office that day. When she came back with the doctor in tow, there was a small introduction and all eyes went back to the monitor to look at the baby. Almost immediately the doctor had me sit up and said that according to what she had seen, there was an almost 100% chance my baby-to-be would have a neural tube defect called Spina Bifida. As I could only look blankly at her, she suggested I go consult with a genetics specialist that afternoon. I did go, but frankly nothing that was explained to me sank in - except the words “this child may never walk.” Two days after all this, I found myself in my obstetrician’s office getting a RhoGam shot after the amniocentesis they needed to do in order to rule out any other birth defects and confirm that my baby would indeed have Spina Bifida. After her nurse gave me the injection, my obstetrician came back in and wanted to talk. She reassured me that she would support me in any decision I chose. I asked what she meant, and she proceeded to tell me that she knows a nearby hospital that does second trimester “terminations.” In order for me to meet their criteria I would have about a week to decide and make the appointment. How could I make such a quick decision that would affect me for the rest of my life? How could I turn down the chance to kiss the hands and feet I had seen on the ultrasound monitor? Then again, how could I bring a child into this world who would have a longer road than most and who would never understand why this happened to them? I was angrier, more confused, and certainly sadder than I had ever been in my life. Though my closest friends were supportive, my family was crushed and thought I should abort to “save myself the heartbreak.” The next few nights were spent on the Internet reading every little morsel of information I could find on Spina Bifida. I quickly realized I might not have had the strength and courage to mother a child with this disability, especially when I remembered that the baby’s spine was affected in the lumbo-thoracic area - high enough on the spine that this baby may never walk. I had really hit a wall. Being a single mother would be bad enough, but the single mother of a child with a birth defect was the nightmare I found myself living. It looked like the termination option was my safest bet. On the very morning I was going to call and make the appointment to terminate, the perinatologist called me with the results of the amniocentesis. She proceeded to tell me that the baby definitely had Spina Bifida, looked good otherwise, and that the baby was a boy. Something inside me suddenly made me grab the ultrasound pictures off the fridge and reconsider. There was something about calling the baby “it” instead of he or she that made my consideration of an abortion so much easier. Now that I knew my baby was a boy somehow I didn’t think I had the right to let this boy, the love of my life, slip out of my life because I didn’t think I could handle it. As I write this, my son Cameron is 15 months old and doing quite well. I will be honest and say that it has been no picnic for either of us in a lot of ways. Six surgeries later, my son still may never walk but I wonder if he’d be the same sweet, social, darling of a child if he didn’t have to be more of a grown-up than many people will ever have to be. He’s faced more in his short life than I can express, but it’s the only life he’s used to and I’m so proud to be his mom. His personality, sense of humor, and courage has kept me going on days I thought I was done for. Should I have taken the easier route and terminated my pregnancy? Would it be easier to not have a child with a disability? I suppose I could have gone that way, but Cameron is the best thing that’s happened to me and I can’t imagine my life without him. I’m so glad I get to kiss the little hands and feet I saw on a monitor so long ago. Shane |
| Cameron |
| I was 39 when I got pregnant and had decided to get no genetic testing, as I never would have terminated. I am very lucky in that my ex-husband and I always agreed that we would want any baby God wanted us to have. I was closely followed by my doc due to high blood pressure and had all kinds of tests, EKG, 24 hour urine, etc. I felt that I would certainly test for things that I could fix. Anyway, 7 Level 2 ultrasounds showed no markers for Ds, but I just had a FEELING Jake had Ds. (He is now 19 mos.) I was separated and lived with my then 14 year old son, Adam (he turned 15 a month later). I told Adam I suspected the baby had Ds, and that maybe I should have an amnio just to be prepared and he responded, "Mom, if we have a baby with Down, we love a baby with Down." Adam only got better from there........ The day Jake was born was traumatic, to say the least. I was induced 3 weeks early due to very high blood pressure after being hospitalized 3 days to try to lower it. My ex-husband and Adam were in the delivery room with me. As soon as Jake came out, I asked the doc., "does he look like he has Ds? " The doc. said "no, I don't think so" and the nurse said, "why would she say that?" A few minutes later, they let me have Jake for just a few seconds before taking him to NICU due to pulmonary hypertension. As soon as the doctor and nurse sat next to my bed, I KNEW. And I will never forget those words, "He has some characteristics which seem to be consistent with Down syndrome." It was like getting kicked in the stomach. I so did not want to be right. But I was already in love with Jake and just knew he was meant to be. Well, long story short (too late), my ex and Adam went with Jake to NICU, Adam videotaping all along the way. You can hear him on the video saying, "Why are you doing that?" and "He doesn't like that.", etc. Adam always loved and accepted Jake and was very protective. The only sadness Adam ever had was when he thought, mistakenly, that his dream of taking his brother to the park to play wouldn't happen as he didn't know that he would be able to walk, run, play, etc. Once told that Jake would be able to do things, just perhaps a bit later, Adam was and has been fine. Apparently, Adam knew about the Ds before I did. He had been videotaping in the delivery room and heard the nurse say to the doctor, "Down" when he zoomed in on them. I asked what went through his mind when they were coming over to tell me and he said, "I was just worried about how hard you were going to take it. That's why I stopped videotaping as soon as they sat down." He then went out in the hall to tell my ex sis and mom-in-law, "you can come in now. they think he has Down syndrome." Jake stayed in NICU for 2 weeks due to a PDA that didn't close immediately. Thankfully, it closed on it's own and heart problems were ruled out. Once his pulmonary hypertension was under control, he had to learn to feed and he did so quickly. We got to bring him home 2 weeks after he was born and he has been exceedingly healthy. He was hospitalized one week when he was 4 mos. old due to bronchilitis but that is the only time he has been seriously ill. I thank God for him each and every day. He is a beautiful and perfect little boy. Friends and family have been wonderful and Jake has captured their hearts without question. I am extremely proud of my sons. Jake and Adam have a beautiful relationship and they worship each other. I work very hard that Adam not be a "built-in babysitter" or "father" to Jake, just the fun brother. The way Jake's face lights up when he sees Adam is unlike anything I've ever seen. So, I have been blessed in so many ways. Laura |
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| Samuel was conceived in Oct. 99 and I was thrilled to find out I was pregnant after only a couple months of trying. However my heart and dreams were crushed when at a scheduled dr. visit my midwife detected an irregular heartbeat. We were told not to worry that it was probably nothing. Just to check it out we made an appointment for a high resolution ultrasound. I wasn't overly concerned after all I was 22 and in my prime child bearing years. I was physically fit and very health conscious. I actually looked forward to the ultrasound and was excited about seeing my baby. It didn't take us long to realize something was wrong. They kept calling in more doctors to have a look , while talking to each other in hushed tones. Once it was finally over they lead us into the 'bad news room' where we learned our baby had a heart deformity "not compatible with life". They recommended we get and amnio the next day. We went home devastated and came back the next day for the amnio. They dr. we talked to that day was encouraging and told us not to give up hope and that if it was just the heart problem there were things they might be able to do to fix it. He also went over the chromosomal problems that could possibly be responsible. For the next week or so while we waitied for the results, we hoped and prayed for the best or at least nothing worse than the prognosis we'd already been given. When I heard the words Trisomy 18 I immediately remembered that as one of the fatal ones. I can't describe my feelings at that moment as I hung up the phone in a numb fog. I was about 20wks at the time. In a subsequent call to the clinic I was informed that my baby would likely die at anytime and I should terminate as soon as possible. We new he was going to die so it was tempting to me to induce early. After all how could I possibly go through 20 more wks of pregnancy. I would never abort because of a possible handicap or health problem but was going on with this just prolonging the inevitable? My husband was opposed to terminating and insisted that this was his son and he deserved to live as long as possible. I was amazed at how bonded Nathanael already was with his son. We after much anguish and soul-searching decided to leave it up to Gods timing and not to interfere. I'm so glad now that I made that choice. The following months were tough ones. Though we didn't understand why this was happening to us we knew it wasn't God inflict this on our baby we knew he would get us through this. I know now that I couldn't have come through it without succumbing to depression and bitterness without his love and comfort. We also had the support of many friends and family who gave us shoulders to cry on. It got harder as the weeks went by and I was definitely looking pregnant. When asked the usual questions a pregnant woman is asked I'd just smile and give them the answer they were looking for but on the inside I was screaming. I struggled with the initial feelings that I wasn't legitimately pregnant. Was I still supposed to take my vitamins, go for check ups, enjoy my baby moving inside me, or take pride in my growing belly? How could I be grieving a baby that was still alive? I couple weeks after we got the horrible news I was wallowing in self pity when Samuel kicked me...hard! It was as if to say " hey I'm still very much alive, take joy in that". It was a light bulb moment. I cherished everyday I spent with him and every night I lay awake while he did aerobics. His life would be brief but it was still a life. We had his grandmothers make him tiny clothes and a baby quilt embroidered with "Samuel is Loved". We wanted whoever took care of him at the hospital to know how valuable he was. We named him as soon as we found out he was a boy to make him seem more like a real person and not just a medical anomaly. One advantage of knowing what the outcome would be was we could prepare for it. We had a birth plan, we had a pediatrician lined up, as well as a funeral home. All we hoped for was that he would be born alive and that we would be able to hold him before he died. The last couple months of pregnancy were very uncomfortable as I was carrying a huge amount of amniotic fluid due to T-18. I had Braxton Hicks constantly so I wasn't real sure when it was the 'real thing'. On May 26th 2000 at 8.00 pm Samuel Wallis Burlando was born alive and kicking. He was immediately put in my arms, we wanted him to spend every minute of his life feeling love. We had chosen ahead of time that he not be put on life support. He was 33 wks and weighed 2 lb 10 oz. He was 15 1/2 inches long. He had a full head of golden brown hair. He had a double cleft lip and a crooked index finger. The cleft lip really took me off guard and I wondered why I hadn't prepared my self for possible obvious deformities. Denial I guess. But this was my child and I was still in awe at every beautiful part of him. From his perfect little feet and his long legs to the tiny perfect finger nails and beautiful hair. Nathanael was so proud of his son. We finally had a chance to hold the baby whose life we had fought for and fallen in love with months earlier. We were able to spend over an hour with him before he quietly slipped from him Daddy's arms into the angels arms. For the first few minutes after he was born he wiggled and let out a few tiny cries, but he was getting so little oxygen (due to the heart defect) that he soon became very still and remained like a sleeping baby the rest of the time. His death came very quietly actually I couldn't tell you the exact moment it happened. I asked the nurse to check his heart again , she was crying and really didn't want to do it and be the bearer of bad news. She shook her head and we new he was now in heaven. We said our good-byes, dressed him, and held him. Nathanael stayed with him after I went to another room to get ready for bed. He told me later they needed to have a talk. The doctor who examined him later was in disbelief that he lived as long as he did considering he had half a heart and was so premature. I was afraid of what the actual dying process would be like, it was less dramatic than I expected. The hardest part was the feeling of utter helplessness. As a mother all these instincts kick in and you would fight to the death to save your baby, but there was nothing anyone could do. It was hard on Nathanael not being able to protect his baby boy from this fate. I felt numb and didn't cry until the next day. I had known I would loose him and had accepted that but now he was really gone. In the frame of a couple hours I had experienced the most physical pain in my life (very long hard labor), known the joy of holding my first born, and the agony of letting him go so soon. That night I longed to run back to the room we had left him in and cradle him in my arms as I had for that cherished hour. I still long to hold him again but I'm comforted to know that someday I will. This time I will see him as the perfect little boy he was created to be. Although good-byes are painful and there is no rhyme or reason to why these thing happen we take joy in the fact that he now has a perfect body and will never experience the pain that this world can cause. In the months to follow I fell into a dark depression and became obsessed with getting pregnant again. I felt as if my heart and soul had been torn from my body and the only way I could heal was with another baby. It wasn't until several months later that I finally made peace with my life as it was, with God , and with my loss. It was that month that I finally conceived and I now have a healthy and very active 11 mo. old daughter. Whom I thank God for everyday. One positive thing that came out of my tragic first pregnancy is that I will never take a healthy baby for granted. In fact I was reminded of that fact a week ago when I miscarried my third pregnancy at 10 wks. Its easy to let fear and anxiety take over my life again but I have to remember that my joy and contentment has to come from a deeper source than my circumstances in life. I would never want to go through it again but I have never regretted my decision to let my baby be born naturally. Every day of morning sickness, discomfort and labor was worth it when I held my baby boy in my arms and his tiny hand curled around my finger. His short life has touched our lives and many others . We thank God for the time we were able to spend with him and for the miracle of his life. I pray that someone who is just beginning a journey similar to the one we came through might be encouraged to know your not alone. You too will get through this. I also want to encourage those people who's babies still have hope for survival. Don't give up on them! Do all you can for them medically and fight for them. I would have given anything to bring my baby home with me health challenges, mental handicaps and all. Once you hold your baby you won't care if he's perfect by the worlds standards, he'll just be your precious child. I know facing life with a possibly handicappped child can be scarey but find out all you can about the condition before you choose to end its life. Find people who are caring for a child like yours and ask them what their regrets are. Handicapped children can have a perfectly happy and fullfilling life, why deny them that chance because of your fear. This situation is not easy and it definately forces you to make choices you thought you'd never have to. Just follow your own heart and remember this is your baby no one else can force you to do something you don't want to do. Samuel you were a gift and we will always love you. Carla |
| Trisomy 18 |
| Samuel |
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