Baby Brayden with his parents

In early November of 2006, I took a pregnancy test and was thrilled to see positive results. I called the doctor’s office and let them know. I was very nervous because we’d miscarried only 7 months earlier while in the 2nd trimester (at 15 weeks) of the pregnancy. My doctor suggested we make an appointment for an Ultrasound. With the prior miscarriage occurring after hearing a heartbeat and having a viable pregnancy, she wanted to take a look right away this time. We had the first ultrasound at 6 weeks and things looked good. I remember the technician saying; “It’s probably too soon to see a heartbeat, but we’ll check”, and of course our baby spoke up loud and strong with a wonderful heartbeat. We felt good and things were off to a good start, with a July 14th due date.

I was very uneasy over the next 4 weeks, waiting from week 6 to week 10 before seeing the doctor again. Since it was also a 4 week period before checking for the heartbeat again, and for my own sanity, I purchased a fetal heart rate monitor. I was able to listen to our baby’s heartbeat at home anytime I wanted. This drastically helped getting through those times between appointments. At my 10 week checkup, the heartbeat was still very strong. Generally I wouldn’t go back to the doctor again for a month, but because of the miscarriage my doctor agreed to see me every 2 weeks, until we got past the point when we had miscarried a few months earlier.

For the next 3 visits (6 weeks) things were going perfect. I felt great, I was starting to show and we were finally telling people the good news. I continued to listen to our baby’s heartbeat every other night or so. At the 16 week visit we had the AFP test done. Since we were 16 weeks along now, past where we had miscarried before, my doctor said we’d go 1 month before the next visit. My ultrasound was scheduled for a few weeks from then, in between the visits, so we were feeling really good about things. Then the AFP results came back, I could tell by the sound of my doctor’s voice, that something was wrong. I really didn’t hear much of what she said other than “there was a 90% chance the results were wrong” and that “I’d need a Level II Ultrasound”. I went home that night a little concerned, but not too bad. Since I hadn’t really heard everything that my doctor said, I focused on the most common findings from the AFP test (Down syndrome and Spina-Bifida) and started researching those. I wasn’t worried if our baby had either of these, I just wanted to be prepared.

On Thursday, Feb. 19th we were 19 weeks along and were headed in for our Level II Ultrasound. We met with a counselor prior to the Ultrasound. She kept talking about a Trisomy 18 chromosome problem and how it was fatal. This was the first time we realized that we were looking at something much more drastic than what we’d thought. Our baby was completely clear of Down syndrome or Spina-Bifida; it was Trisomy 18 that the AFP showed a 1/10 chance our baby had. Now we were nervous as we walked down the hall to the Ultrasound room. It seemed like it took forever to get there.

During the Ultrasound the technician just did her normal thing. “Here’s the leg, arm, etc.” She didn’t indicate anything was wrong so we started to feel ok about things. We started to visit about our baby on the screen. The technician left and the doctor came in, she told us our baby was measuring VERY small and that everything they saw on the screen was confirming the AFP results of the possibility of Trisomy 18. Our baby had a lot of fluid on the brain, the legs were about 3 weeks behind, the torso about 5 weeks behind, the stomach wasn’t filling up with fluids indicating feeding problems, and because of the baby’s size they couldn’t get a good look at the heart or other vital organs. They left us for a while as we cried. We couldn’t believe this was happening again. We had just reached the point where we had let our guard down. What would we tell our son?. We hated to put him through this again. We had so many emotions just pouring out of us. We decided to have an amniocentesis done. Earlier in the day I was completely against this because of the risk of miscarriage. We wanted to find out what our baby had so we could prepare and do everything possible to help. They decided to put the test through a quicker process called a FISH test because it would focus specifically on this type of chromosome problem. With the weekend right around the corner, we would have to wait until Monday to hear anything back.

By the time the call came on Monday I had read a lot of information online, finding babies that survived with Trisomy 18 and was relying on that to get me through the weekend. Unfortunately, when they called, they said that our baby was even more sick than Trisomy 18, our baby had Triploid Syndrome (or Triploidy). I remember thinking how can it get worse, but it did. My husband and I cried all over again, as if the news was brand new. Later that day we went down to the hospital to meet with a genetics counselor. We found out from the FISH results our little baby was a boy (XXY). The counselor explained how some Triploid cases can be very dangerous to mom. There can be an increased risk of an enlarged placenta, high blood pressure and toxemia. Those risks are more common with paternal triploid, which is 2 sperm fertilizing 1 egg. Our sweet little boy had maternal triploid which typically doesn’t have these risks to mom, this is where the egg contained the extra set of chromosomes and only 1 sperm fertilized it. We were given our options; terminate the pregnancy, or continue. We were told that any decision to terminate would have to be decided as soon as possible because the state of Iowa does not allow early termination after 23 weeks and we were now 20 weeks along. We left that day feeling like there was a lot of pressure to terminate and that we were crazy to go on. Neither the genetics counselor nor our Dr. told us to terminate, the hospital was very wonderful in just giving us all the information we needed to make a decision, but we still had this feeling like that was what they were suggesting we decide to do.

We met with our doctor a few days later. One of the first things she said was that she stood behind whatever decision we made. She mentioned termination again, but also said that she’d support us going forward as well. We were/are very blessed to have such a supportive doctor. When I told her that there was no way I could quit fighting for my child when he was still fighting, she understood completely. Our plan was to continue. She wanted to see me every 2 weeks to monitor my blood pressure. She ran some initial tests to make sure everything was ok. I went in every 2 weeks and had a normal pre-natal visit. Every appointment my doctor reminded me that we probably wouldn’t make it to term, and yet at every visit she was also amazed that our little boy still had a strong heartbeat. He was beating all the odds from their medical perspective. We soon realized just how strong and how much of a fighter he really was.

As we continued through the pregnancy it was hard to know when to tell people of our sweet little boy’s struggle or when to just say what we were having and when. It is very difficult when you run into someone in the grocery store or anywhere and knowing how to handle their questions or their asking “how is everything going?”. So we just took it one case at a time. For those that knew we were pregnant already, we told them what was going on. Within a few weeks of the ultrasound we decided on the name Brayden Robert for our little boy. We got the name out to our family and friends as soon as we decided, so everyone could start to recognize his life in this world.

At 28 weeks, in April, we went for a follow up ultrasound. At this ultrasound we found out that the water on his brain, wasn’t as much as initially thought. It was at the high end of normal. His stomach was filling up with fluid, so the initial thoughts of problems there were eliminated. His heart looked good and strong. They couldn’t find any of the defects that were common for a baby with Triploid. There were no holes in the spine, no physical abnormalities like cleft lip or any other very common Triploid traits. As his mother, I started to convince myself we would be the lucky ones. He would be ok and survive for a period of time. Then the doctor explained to us, that his size is still lagging. He was still about 5 weeks behind in growth. He told us that his torso was very tight and that it would cause one of two problems for Brayden. His tiny chest cavity would either constrict his heart too much, preventing it from being able to beat, or he would make it to term, but there would be no room for his lungs to expand and he would never be able to take that first breath. This was just another devastating bit of information after hearing how his brain, heart and vital organs were perfect. But I still left with my head high, because I knew just how strong he was and how much fight he had in him.

Since our little Brayden was so small I never felt him move or kick much. Sometimes I would feel only 1 or 2 kicks in a week, my husband Chuck was never able to feel Brayden move. Having my fetal heart rate monitor was a blessing. My doctor even found it to be helpful for us to monitor his fight. At 33 weeks that became a reality. On Saturday May 26th I didn’t pick up a heartbeat, which had happened in the past, so I didn’t get too upset about it. I checked again 2 days later, again, no heartbeat. This time I felt like this was probably a bad sign. I refused to call the doctor. I didn’t want to hear what they would probably have to tell me and since I had another appointment in just a couple of days, I felt that I would just try to enjoy Brayden being with me for a few more days. The next day I started spotting, the exact same spotting that occurred a year earlier with my miscarriage. We now knew that Brayden got too tired to fight and it was time for him to rest. We headed to the hospital where they checked and confirmed that his heart had stopped beating. We set up the time to come in and be induced the next day.

Thursday, May 31st, was the day; we were finally going to meet this special little boy that had fought the odds for 33 weeks and 5 days. We went in at 9:00 that morning. They started the induction around 10:30 and he was born at 5:40 pm. Our 1.46lb, 13 inch angel was finally here. Brayden’s grandparents, his aunt and his big brother Gavin were also there to meet him. Thanks to so many people I’d talked with through Prenatal Partners For Life we were prepared for his special arrival and were able to make the best of a very difficult time. We took a lot of photos, made hand/foot molds. We had blankets and gifts for him including gifts our son brought for his little Brother, it was perfect. Although no one wants to see their children go before them, we couldn’t have had a better day for him.

We had Brayden with us till 10:30 that night and then had the hospital staff bring him in again the next morning so we could say our final good-bye’s. Leaving the hospital that morning without our son was the hardest thing we’ve had to do. We are very thankful that our family was able to be there to meet Brayden and are especially grateful that his big brother Gavin was able to be there.

Our 4 year old son Gavin, talks about his brother daily and loves to look at the photo albums I put together of his little brother. That is something that we could never replace. We will forever love and miss Brayden, we are so thankful we had the opportunity to meet our precious son.

 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.