Valentines Day 1999 I took a home pregnancy test on a hunch. We’d been trying to get pregnant for about 3 years with the help of fertility drugs. There was only one line after 3 minutes, so I took a quick shower. When I got out of the shower there were 2 lines. About 10 minutes had passed. I thought I must have left it sit too long. The next morning I tried another one (after trying to get pregnant for that long I learned to buy the 2 packs of EPTs) The same thing happened. I called the 800 number on the box. The voice on the other end told me I was pregnant! She said it takes at least 3 minutes, sometimes up to about 20. If there are 2 lines, you are pregnant. I asked her if she was sure. I went to the clinic to confirm my results. Dave and I were so excited! To top things off, I was due on what would be my dad’s 50th Birthday! We were so excited! Finally, it worked!
Things were going great until about Easter time. Shortly after that, I started spotting. I went in and they did an ultra sound at 9 weeks. They couldn’t find anything wrong, and the spotting had stopped. They told me sometimes that “happens”. I went back in for another ultrasound recheck at about 12 weeks. I saw those amazing ultrasound pictures! I could tell then, that baby was going to look like it’s daddy. The lady that did the ultrasound said she thought my dates were off, but we had kept track, and knew exactly! May arrived. I was throwing up non stop! I was dehydrated, losing weight in and out of the hospital. To me this losing weight thing wasn’t uncommon. I lost 32 pounds with our twin boys born in 1993. I ate what I could, but it always came out. I couldn’t even hold in water! Time passed, and I felt a little better. July we had scheduled another ultra sound just to check things out. July 21st I went in for my third ultra sound. Dave and I were curious to what the sex was, but this lady didn’t say too much. We had brought a blank tape so we could record the ultrasound. Later that afternoon my doctor called. Dr. Hanson said they saw something on the ultrasound that looked like fluid around the brain, and a small opening in the baby’s very lower back. “Spina Bifida” I said. I was familiar with it, my brother Brett has it. He said yes. They wanted me to go to “Specialists” in the next state. (We live right on the border, and this hospital was supposed to be experts in high risk pregnancies). So the following day we headed for United Hospital in St. Paul.
We arrived at United and they did what they called a level 2 ultrasound. This lady did a lot more talking than our usual ultrasound technician. This one told us yes, it looked like Spina Bifida, and she showed Dave and I where the opening was . It was a shock, to have it confirmed, but as I said – my brother has it. The lower the opening in the spine, the better it is. She continued writing things down, and scanning our baby. Then a doctor came into the room. She talked to the ultrasound technician, and of course Dave and I couldn’t understand the medical terminology. This doctor proceeded to tell us that our baby did in fact have Spina Bifida. There was fluid around the brain, and that opening in its lower spine. Our baby also was small for its gestational age, and appeared to have a clubbed foot. The baby wouldn’t open its hands, they seemed concerned about that too. Then the doctor said all these things combined were leading them to suspect something called Triosomy 13 or Trisomy 18. Something about chromosomes. I’d wished I’d paid more attention in science classes then! It was then she hit us she said these chromosome abnormalities are fatal to babies. Fatal. Most of what she said from there on I don’t really remember. They wanted to do an amnio to confirm their suspicions. I consented. They had to be wrong. While she prepared for the amnio, a genetic counselor came in to talk to us. I remember her asking if I was okay. I was sobbing uncontrollably. No I was not “okay”. They just said our baby would die? She gave me her card, and said she was sorry about our baby.They did the amnio. This was on a Friday, and they sent us home for the weekend basically telling us to plan our baby’s funeral.
Monday they called with the “FISH” results. They said it was not Trisomy 13 or 18, but something called Triploidy, or Triploidy syndrome. She said if it’s possible, it’s even more fatal than the other 2 previously thought. Triploidy – it happens so seldom, they couldn’t give us any documented information on the subject. It usually happens when there is 1 egg and 2 sperms that fertilize the egg at the very same time. This gives the baby an entire extra set of all the chromosomes.69 instead of the normal 46. She said Most of these babies don’t make it past 20 weeks gestation. They told us our baby was 69 XXY. A Boy. I was at 28 weeks gestation at that point. The doctor encouraged us to “induce” the pregnancy and be done with it. To “end it”. “It” was our son!! This was our baby she was talking about. I asked if our baby boy was in any pain. They assured us he was not. My body was helping his run, and he was doing fine. This doctor told us most of these babies miscarry earlier. Those few that do make it to delivery, are almost always stillborn. Again she said we should end our pregnancy and “be done with it”. I didn’t even need time to think. Our baby wasn’t in pain, he’d already beat the odds and made it to 28 weeks! He was about 3 weeks behind in growth according to his gestational age, and he had Spina Bifida. They found no abnormalities with his heart or lungs. They could see that his intestines were outside of his body near the belly button hole. They told us that happened to even normal babies sometimes, and was not a big deal. I was not aborting my baby. I was determined to do everything in my power for this baby boy of ours. It was all up to God anyhow. I said a lot of prayers, and did what I could. He deserved it. We decided to name him Carter Gerald (Gerald after my dad~they were suppose to share a Birthday).
From that point on I was back and forth between my doctor in New Richmond and these specialists at United every week. I had countless ultrasounds, and tests done. They warned me about toxemia (goes with Triploidy pregnancies). At one visit to the specialist, she told us these babies don’t do well with stress of any kind, especially the stress of a vaginal delivery. I asked about a c-section,she said no way!! I was determined to do what I had to for this baby of ours. It took us 3 years and a lot of drugs and disappointed months of trying for him! Something told me to go on. I’m not sure if it was in my heart, or my gut, but something told me I needed to have a c-section! I had delivered our twins vaginally. ( They weighed 5 pounds 6 ounces and 6 pounds 7 ounces both 19 inches long, and a month early!) Our boys knew our baby Carter was sick. They were too young for all the details, but they knew he was sick. I had a goal to at least allow them to see their baby brother, so they would know he really existed. My regular doctor, (Dr. Hanson) and the entire clinic/hospital in New RIchmond was very supportive of me, while the “specialists” continued to encourage me to “induce, and be done with it”. Each visit they encouraged me to” induce and be done with it.” While I was still in a state of shock and denial, I called our local funeral director, and our pastor.
September rolled around. After many tears and disgusted visits to the specialists, she finally consented to do a c-section. She wasn’t happy about it, but I just had to do it. I had to fight for Carter! Even if it meant we could hold him just for a minute – he would have an easier birth process! I had lost 52 pounds. My blood pressure was climbing to dangerous levels. Toxemia was setting in they said. I was still hanging in there, and to their surprise, so was Carter! I was sure they were wrong about this Triploidy thing. At 38 weeks exactly my blood pressure and protein in the urine were way too high. Dr. Hanson feared I’d have a stroke. It was time to deliver Carter. They sent us back to United to deliver him, expecting a live birth. The admitting doctor was not familiar with us. He refused to do a c-section,saying it wasn’t medically necessary! So, I refused to let him touch me! He called the doctor we usually had seen. She said she’d come in and do it. She did. I was prepared for the c-section. We called our church pastor. “Pastor Jon” was also a family friend. He had agreed beforehand that he would come to the hospital and baptize Carter immediately after he was born. Pastor Jon, Dave, and I don’t know how many doctors were in that room we were as ready as we could be. My parents waited outside, along with my sister Mindy, her boyfriend Jason, my Aunt Karen and her fiance Bob. At 7:33 p.m. Wednesday, September 29, 1999 Carter Gerald entered the world via c-section. He weighed 3 pounds 8 ounces, 13 inches long. PJ baptized him, Dave took pictures. I didn’t hear him cry. Was he alive? They tended to him, checking his vitals and cleaning him up. They let me hold him a few minutes. He looked like his daddy and his older brother Jake. They had prepared us that Triploidy babies can have many many serious deformities. He looked perfect to me. The doctors took him to Children’s Hospital (across the hallway) to the NICU for more testing. He was alive and doing surprisingly well! He was breathing on his own.
From Wednesday night on we had Carter with us as much as we could. We took lots of pictures, though not enough. We had many visitors, family and friends. Carter did great the first day or so. By Thursday afternoon he needed a small amount of oxygen to assist his breathing. The nurses from NICU asked if I would mind taking oxygen home. One nurse in particular helped out a lot. Polly answered questions, told me things I didn’t know, and seemed to really care. He was having trouble eating, so they were tube feeding him. Polly showed my how to do it so we could take him home. Home? Carter would go home?? They thought he was doing so well, they were considering letting us take him home! Friday was a different story.
I could see he was getting yellow-jaundice. They said they wouldn’t put him under the “lights” because it wouldn’t help him. They were turning up his oxygen though. Friday afternoon a family friend Debbie stopped in to visit Carter and I. She had delivered a preemie baby, Cally. Cally and her brother Tyler had been the ring bearer and flower girl in Dave and my wedding. I use to babysit them both. Then tragically in 1997 at the age of 9, Cally was killed in a car accident. I thought a lot about Cally-she was always such a special little girl to Dave and I. Debbie said she could see Cally in Carter. She meant she could remember Cally looking that tiny and fragile, but chills went up my spine. I knew Cally was WITH Carter. I knew by looking at Carter that he wouldn’t be with us much longer. Cally was here for him. Carter went down hill the rest of that day. That night my parents brought our twins-Jake and Ryan (5 years old) to see their brother. They had both had strep throat earlier that week, so we wanted to make sure they were on their antibiotics long enough. Jake held Carter, Ryan didn’t want to. The doctors came in telling us Carter was failing and we had to decide if we wanted life support or to let him go. We requested a second test be done to confirm Triploidy. The hardest decision we ever had to make was telling those doctors to take Carter off the oxygen. It was about 9:15 p.m. My sister Mindy and friends of ours, Julie and Chasa took Jake and Ryan home. Pastor Jon, my parents, Dave and I were left. They brought Carter into my room. We all held him, and said our goodbyes. Dave and I sat on my hospital bed. At 11:30 p.m. Carter took his last breath in my arms. He was gone. I held him for a while after the nurses confirmed he was gone. I wasn’t ready for them to take him away. At 52 hours 57 minutes our baby was gone.
Dave and I were left numb. I had no feelings at all. I remember nurses, doctors, social workers and whoever else coming and going all night, but remember little of what was said by any of them. My parents and Pastor Jon had gone home. Dave stayed with me in my hospital bed. Neither of us slept, though we were exhausted from all the emotions. Saturday morning the doctor that delivered Carter came in. She said he did so much better than they thought he would! They honestly thought he would go home! I was in the maternity ward, though my baby was in NICU. I could hear babies crying all night long! I was miserable! How could I even think about getting rest? I had to listen to those other babies! Mine was gone! She let me go home that day. The ride in that wheel chair down those big empty halls – I had a pillow and a plant in my lap. There was a balloon tied to it that said”Congratulations”. with tiny baby footprints on it. I felt so empty! No baby. I was so sad. The tears were burning in my eyes, yet I felt nothing. All I had was a scar, some footprints, a baby blanket, rolls of film, and a broken heart.
Our baby had died! We really DID have to have a funeral! We met with the funeral director, our pastor helped us. Dave and I had to pick out a tiny white casket for our son. No bigger than a dresser drawer. We also had to go pick out a cemetery plot. We ended up buying a double plot. Dave and I will also be buried there, with Carter cross-ways like our pillow. We had a small simple funeral for Carter. Pastor Jon performed a beautiful service. We decided to have an open casket for an hour before the service for our family members that hadn’t gotten to see him. I stood there the entire time. I couldn’t take my eyes off baby Carter. I wanted to memorize him! We buried our son 2 days before my 30th Birthday. He never made it to my dad’s Birthday ~ his due date.
The days and weeks that followed were mostly a blur. My heart and arms ached to hold my baby one more time. They still do. I had nightmares. I couldn’t sleep! I was afraid to sleep, I knew I’d have nightmares again! I would dream there was a baby crying, and when I woke up-there was no baby. People told me that was normal. I didn’t know what normal was anymore. Our lives had changed forever. There was no way we could ever replace Carter in our lives. He will always be in our hearts and souls. I still visit the cemetary every week. We have many pictures of him around our house, to remind us of his brief time with us. I can say I am glad I chose NOT to “induce and get it over with” because we never would have had the chance to meet Carter. What if the tests were wrong? I would have always wondered-“what if?”. I knew we did the best we could for him. He had beat most odds, and survived 3 days. Those were 3 days we will never forget! The dates and anniversaries are still hard. We planted a “Carter Tree” in our front yard my Aunt Judy and Uncle Jerome gave us the day of Carter’s funeral. That really meant a lot to us.
I must say that information on Triploidy was scarce to come by. Our doctors didn’t have very much to give us, so I set out on the internet. I found a few websites on Rare Chromosomes, but not much about Triploidy. Finally I stumbled onto Beverly at Unique – she introduced me to Jacki – a mom that had lost her daughter Peyton Elizabeth on May 31, 1999 to Triploidy. Peyton was born-asleep. Jacki was a great help to me. We e-mailed back and forth daily. Jacki lived in Washington State, I was in Wisconsin. She gave me the support and kind words I needed. Jacki also introduced me to the Triploidy support page on the internet. Here were pages of Triploidy parents that had gone through what we had! Our doctors led us to believe we were the only ones in the USA that had a Triploidy baby! I have learned so much from the people on this site! Medical information, advice, support, and I’ve gained a few more e-friends. Someday I hope to meet in person some of these people that have made such a big impact on my life. None, however have left as huge an impact as Carter.
Laurie, mommy to:
Jake & Ryan (twins 11/93)
Carter (9/29/99-10/1/99) Triploidy