‘We decided to fight for Oliver. His dad said, ‘If you’re in, I’m in.’ I was extremely nervous. He looked right into my eyes the moment we met.’

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“After months of my oldest son begging for a sibling and two miscarriages, we got a positive pregnancy test once again. This time it stuck! Each week brought more hope and excitement. After our 12 week scan we told big brother and announced to our friends and family. We started buying baby things and furnishing the nursery. The day of our 20 week anatomy scan came and we were so excited to find out the sex of our baby. The ultrasound tech said ‘it’s a boy’ and that he had ten fingers and ten toes but there were a few concerns that she wanted to speak with the doctor about. The doctor came in to have a look and then asked us to meet with her right after. We were then told our sweet boy had clubbed feet, clenched fists and choroid plexus cysts on his brain. she said, ‘Your baby’s brain development and heart function are quite concerning to me and I would like you to get a second opinion’. At that point we were referred to the Mayo Clinic and needed to see a specialist as soon as possible. We got to the car and discussed our concerns about how to move forward. What would we tell big brother? What would we tell our family and friends who were all waiting to hear news of our scan? How would we deal with all the choices and emotions the next weeks would bring? I  remember us getting to the car, looking at one another and him saying, ‘Whatever happens it’ll be okay.’ We were overwhelmed and absolutely terrified but chose to carry on as best as we could. We continued decorating the nursery and announced that we would be naming our baby boy, Oliver Jameson.

Pregnant woman who had a few miscarriages stands taking mirror selfie in home
Courtesy of Samantha Houghton

A few days later we met with the specialist and all the previous findings were confirmed. They assumed Oliver had Trisomy 18. We spoke about our options which included termination, continuing the pregnancy, more invasive testing and what our future could hold depending on our decisions. We then decided to have an amniocentesis to get clearer answers. The results came back negative for any common chromosomal syndromes so we were still left with no answers. I was then approached by a family member who informed me of a syndrome that had affected boys born into my family in the past. I notified my doctor and the amnio sample was sent out to be tested once again. This time the results came back positive. We had our answer. Oliver had TARP Syndrome.  I had done a bit of research prior to getting our results so I was terrified. I knew he wasn’t going to have a great chance of survival and we would definitely be spending a lot of time in the hospital. I spent the next few weeks compiling loads of information and statistics. The odds were most definitely not in his favor but his doctors agreed to give him the best chance they could. They said he had a chance of about 10% to make it to birth. We decided right there to fight for Oliver as long as he would let us. I strongly considered all our options but I can remember Oliver’s dad saying, ‘If you’re in, then I’m in.’ I had many ultrasounds to watch his growth and development. I was extremely nervous during my pregnancy. I listened to his heartbeat everyday at home and made sure to pay close attention to any movements and kicks.

Ultrasound of baby with TARP Syndrome
Courtesy of Samantha Houghton

Much to our surprise he made it to our induction date at 37 weeks. The induction turned out to be too much for Oliver’s heart and he was eventually delivered by emergency c-section. He was born 4 pounds and absolutely silent but alive! I was in absolute shock as the anesthesiologist was running back and forth to relay us information on how he was doing. I was relieved that Oliver was born alive but the next few minutes would determine if medical intervention could keep him alive. He was immediately intubated due to respiratory distress but he was okay. We got to see him briefly before he was taken to the NICU. That moment will forever be one of my favorite memories.  Oliver looked perfect. He looked right into my eyes the moment that we met. He was tiny but so beautiful.

Mother smiles as she looks down at intubated newborn laying asleep on her chest
Courtesy of Samantha Houghton

We spent the next month living at The Ronald McDonald House and loving on our boy in the NICU. He had many scans and tests to determine future care. We knew we wouldn’t have him long. He had surgery to place a g tube and colostomy and also went through serial casting for his clubbed feet. Oliver continued to grow and become stronger and was able to come home at only one month old. His medical team was very impressed and we were all so excited to see what the next weeks would bring. We looked forward to snuggling on the couch, getting to sleep in our own beds and just being a family again. We were still unsure of Oliver’s abilities to progress and hit milestones but we were excited to help him thrive as best as we could.  We were extremely nervous to bring Oliver home. He had a very strict schedule when it came to eating. He was on full time oxygen so we had to be sure everything was always perfect to just keep him alive.

Newborn on oxygen with TARP Syndrome lays on back in NICU
Courtesy of Samantha Houghton

At three months old Oliver went through jaw distraction surgery and recovered very quickly. Unfortunately he developed pneumonia soon after and was hospitalized for a short time. Not long after returning home we were back in the hospital with RSV. He could not stay healthy and we knew something bigger was going on. His team decided to run some tests and take a closer look at his heart. After over a week in the PICU I was called into a meeting to discuss the findings and future plans of care. I was nervous and hopeful but in no way ready to hear what I was about to be told.

Baby on oxygen with RSV sits on bean bag in PICU
Courtesy of Samantha Houghton

The words, ‘Oliver has Hypertrophic Cardiomyopathy. It requires a heart transplant and he does not qualify for one.’, still ring in my ears. It felt like I was out of my body, hovering over the table listening to the conversation. The doctors hugged me and told me I was now in charge. They would do whatever I thought was best and were there to support me every step of the way. I left the room and walked back down the hall to Oliver’s room. I laid over the side of his crib and sobbed. We had spent months fighting for his life and it was going to be over. We tried to continue his heart medication but a lower heart rate made him upset and caused him to go into distress so we made the choice to switch him over to comfort care.

Baby boy on oxygen with Hypertrophic Cardiomyopathy smiles as he lays on back in PICU
Courtesy of Samantha Houghton

We then did what no parent should ever have to do. We signed the ‘do not resuscitate’ form. We climbed into a hospital bed with Oliver and spent the night memorizing his sweet face. Early the next morning he took his last breath. We gave him a bath, dressed him in a dinosaur outfit his big brother picked out, and snuggled him for a few hours. We then knew it was time to let his body go so we kissed his cheeks one last time and laid him in the body bag. They gave us the option of being out of the room but I knew I had to be the one to do it. We sent his favorite stuffed animal with him and I now sleep with it every night. Saying goodbye to our baby boy was soul crushing. We will never forget those last heartbreaking moments but we choose to also remember the wonderful memories. We got five months with Oliver after being told we most likely wouldn’t get to meet him alive. Oliver taught us so much in such a short time and he will always be our perfect little miracle.”

Little boy smiles as he sits on couch holding baby brother on oxygen in his lap
Courtesy of Samantha Houghton

This story was submitted to Love What Matters by Samantha Houghton of Minnesota. Follow her on Instagram here. Do you have a similar experience? We’d like to hear your important journeySubmit your own story here, and subscribe to our best stories in our free newsletter here.

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