I’m going to be fairly detailed, I remember having so many questions when I first learned that my baby had trisomy 18. Hopefully this will help another family who just found out.
2019 was a difficult year for us. We got married in May, my husband deployed in June and I found out a week later that I was pregnant with our first baby. We were absolutely ecstatic, I have always wanted to be a mother. We made it through the deployment, my husband came home in November and at our very first ultrasound together (the 24 week – detailed ultrasound) we found out our baby girl had a problem. The doctor did not sugar coat anything, she basically said that my baby was deformed, had multiple organ issues and missing brain markers. It was absolutely devastating, I couldn’t stop crying the entire time she was talking to us but I wanted to know everything. The worst thing was, we had no idea what was wrong, just that everything was wrong and up until this point everything had been perfectly fine! We went to a genetic counselor the next day and opted to get the amniocenteses to identify what was wrong, it was at this point that the genetics counselor told us she thought it was trisomy 18 from the multiple organ issues and how trisomy effects every cell. It felt like an eternity but we received the preliminary results from the fishers testing three days later – it confirmed that it was trisomy 18. Two days after that the final results were in and concluded the same results. I immediately started researching everything I possibly could and actually found this website where I read multiple stories. I remember reading one story where the baby lived for three months and it got my hopes up that it could happen for us! But my husband didn’t want to get his hopes up since anything could happen. The worst thing about trisomy for me was how wildly different every story is and even though we had answers we still had absolutely no idea what to expect for our baby and the doctors couldn’t tell us either. We could miscarry at any time, we could make it to term and she be stillborn, we could deliver and she only have a few hours, no one knew. Our providers were pushing us to abort, they were ready to fly us out to Colorado (since we were past the abortion time in our state), it was too much. I remember our OB talking to us and explaining that “this is a baby that won’t smile back at you” and I was just devastated to hear that. (I am not against abortion, many people do choose to abort, every situation is different and you have to make the best decision for you and your family)
We decided we needed to see this through, she was our little baby no matter what happened and we wanted to meet her if she would let us. We decided that we would treat this pregnancy just like any other, we opted out of further testing and decided to go down a palliative care approach. Madelyn had hyperplastic left heart syndrome among other organ issues. Though we could have opted in for heart surgery and other methods of intervention, we knew that we could never cure her. So we wanted to give her literally a lifetime of love and not a lifetime spent in the hospital getting poked and prodded for surgery after surgery. During the pregnancy we monitored her growth, she was always perfect and little, the pregnancy was a cake walk (other than the series of extreme crying because we were terrified and helpless of course…). I remember trying so hard to be as relaxed as possible so I wouldn’t stress her out, I think it helped because we made it all the way to 39 weeks and our OB decided to induce us. It was literally the only thing we had control over throughout this experience. Through labor I opted out of monitoring baby Maddie, our thought was if I just stayed relaxed her transition would be easier and if I knew she was struggling, I would be scared and then we both would be in trouble. Maddie was born, I asked the OB prior to keep the umbilical chord attached (its called delayed chord cutting) to allow any extra blood and nutrients to pump to Maddie for as long as I could. She wasn’t breathing when she was born, she was so purple, they put her right on my chest and my husband and I rubbed her and talked to her. We told her how much we loved her and how perfect she was – and she came back! Her perfect little cry was the most amazing noise we ever heard! She was a perfect 4lb 12oz 19in long baby and she was so beautiful, my husband was able to cut the chord. We got her baptized immediately by the priest in the hospital.
Our doctors told us with her heart issue that she would have about 1-48 hrs before a valve closed and she would no longer be able to push blood appropriately. We didn’t sleep for 2 days, we stayed up with her and the first two days were terrifying. She would have these apnea episodes where she would start to cry and stop breathing to the point that she would turn completely blue-purple and we would think she was going.. But she came back every time. I delivered Maddie on March 6, 2020 – the beginning of the COVID shutdown. We stayed in the hospital with her for 10 days, with trisomy there are chances that the baby can’t suck and we were afraid she wouldn’t. We gave her some plungers of formula, a tiny amount. Finally after 18 hours she would suck a little bit but her mouth wasn’t big enough/wouldn’t open enough for a bottle. We would work the nipple around her lips and she was strong enough to pull the formula out with her lips and a fast flow nipple. After 10 days, we took Maddie home. We set up a home care plan, with a visiting nurse and PA who helped monitor her.
During Maddie’s time at home she met everyone in our family. Though we were in quarantine, it was a godsend. It allowed us time to stay home with her, its like to world stopped for our little girl. We had to disinfect and self-isolate prior to visits but she met grandparents, great grandparents, aunties, uncles, cousins, friends, everyone got a chance to meet little Maddie. She got to meet her two dogs who loved her, we went on hikes, on car rides, she tried ice cream and loved it. She helped with yard work, we went on walks almost daily, we co-slept so that she was never alone (I know its very dangerous, I would prop myself up so I couldn’t move and my husband stayed awake the first few weeks to make sure I never moved). She absolutely loved being held, we probably only put her down by herself for a total of 30 minutes of her entire life! She got a million kisses and started eating with her whole mouth. We created songs just for her, we took baths together and I would sing to her constantly. She was in my arms at least 20 hours a day, every day and I loved every second. I never minded the loss of sleep or her crying or anything I hear new parents complain about, I knew it was all such a precious gift.
19 May 2020, when we were going to sleep. I was walking back and forth upstairs with her trying to get her to sleep. She was very bloated and extremely awake. I was holding her, talking to her, she had her pacifier, and was just looking around. Not being fussy or crying. I looked to talk to my husband for a second, looked back down and she was gone. It was very peaceful, she didn’t cry or look uncomfortable at all. We held her for hours and said our goodbyes.
To any family out there that has recently discovered their baby has trisomy 18, do all the research you can to make the decision that is best for your family. I joined a Facebook support group for trisomy and they were all so judgmental of anyone who did not choose to take the medical route and that is absolutely unacceptable. I chose palliative care and I know Maddie had such a happy life. She was able to experience so many wonderful things in life! We knew we could have lost her at any moment through the pregnancy and I truly think that was the most difficult aspect of this experience – there is so much unknown. But if you choose to see it through, I recommend you try to keep the anxiety down during pregnancy, delay the chord cutting to allow baby to get as much blood as possible, and just love them as much as you possibly can! This is the most painful thing we have ever been through, I feel like I lost a piece of myself and I’ll never be the same again. But I don’t regret a thing, she was worth every tear and sleepless night. We prayed that she would be born alive so we could at least get her baptized but Madelyn gave us 74 days, 3 hours and 6 minutes – each second was an absolute gift from god. I hope my story helps someone else just as another story on this website helped me.
Madelyn 74d 3hr 6min
