By Alyce Collins
THIS MOTHER was warned her son’s underdeveloped heart was INOPERABLE, so she had just TWO DAYS with him before he sadly passed away, but she is sharing her journey through loss and a second pregnancy to eradicate the stigma around infant loss.
Caitlin Merrill (28) from North Carolina, USA, found out she was expecting her first child in July 2017, to her own shock and elation when her GP got her to take a pregnancy test for what she initially thought was sickness.
For the first three months, Caitlin’s pregnancy was joyful, however, on October 19, 2017 Caitlin and her partner, Tony went for an anatomy scan which revealed an issue with their unborn son’s heart. Scans confirmed that the left ventricle was severely underdeveloped, a condition known as Hypoplastic Left Heart Syndrome.
Caitlin and Tony were told that their son, who they named Thaxton, could undergo surgery after birth, to correct his heart. Although, when Caitlin was 34-weeks pregnant, doctors deemed Thaxton’s heart too underdeveloped for an operation as he wouldn’t survive the surgery.
Caitlin was induced at 38-weeks, but Thaxton’s heart became stressed and midwives warned that he might not survive the delivery. To everyone’s amazement, Thaxton was born alive on February 22. Thaxton was born a blue colour, in-part due to his heart condition. His charts looked positive and Caitlin hoped that her son would defy the odds to get better.
On February 24, Caitlin’s mother was holding Thaxton when she noticed his body was slowing down in his sleep. Nurses were alerted and they confirmed that Thaxton was passing.
Through the heartbreak of losing her first child, Caitlin felt guilty and blamed herself, but she also learnt to appreciate every breath as it’s never certain which will be our last.
Eight months after Thaxton passed away, Caitlin found out she was pregnant again, which left her with excitement and a huge sense of fear. But in February 2019, she was overjoyed to find out she was expecting a daughter, with a healthy, four-chambered heart.
“I went to urgent care before work and my doctor was concerned about my low-grade fever,” said Caitlin.
“She asked about my cycle and then gave me a pregnancy test, which came back positive. My now husband was also working that day, so I had to wait until we both got home from work to spill the beans.
“The beginning was great, I had no morning sickness and very little fatigue. It wasn’t until Thaxton’s diagnosis that everything started to go wrong. It seemed like I couldn’t catch a break.
“We found out about the heart condition on October 19, 2017 during Thaxton’s anatomy scan. The ultrasound tech and doctor found an issue with the heart, that the left ventricle was severely underdeveloped, a condition called Hypoplastic Left Heart Syndrome.
“That doctor referred us to maternal foetal medicine, and we were seen the next day, where the diagnosis was confirmed.
“I was scared and disappointed. I was scared for my baby and disappointed, like I’d failed in providing him everything I could have for him to have a healthy body. We were immediately told about the surgical options available, so that was the route we chose.
“We actually went from 20-weeks up until 34-weeks thinking Thaxton would have medical intervention. It was at the 34-week check-up with the surgical team that they deemed him inoperable because his heart was in such horrible condition.
“He would never survive the first surgery. The medical staff refused to operate on him knowing he would suffer and not survive, so Thaxton was born into palliative care.
“I was induced at 38 weeks. My water broke around 4:30am on February 22, 2018 but as the labour progressed, Thaxton’s heart became more stressed and we were warned that he may not survive the rest of the delivery.
“I only pushed for about 20 minutes before Thaxton was born. I had a hard time pushing because I was stressing myself out and not listening to my nurses. I ended up bursting a bunch of blood vessels in my eyes and on my face.”
Caitlin and Tony spent the next two days in hospital, while she and Thaxton were closely monitored.
Following the many warnings that Thaxton might not be born alive, or would only survive a few hours, they were overjoyed to spend two days with him and let members of their families meet their first born.
“After Thaxton was born, his stats were great, considering the circumstances, so we were hopeful. I had the naive hope that even after all our monitoring and ultrasounds that everything was incorrect, and he was healthy, but sadly that wasn’t the case,” said Caitlin.
“He passed away February 24, 2018 at 4:35 am. My mum was holding him while he slept, and she noticed his body was slowing down. She alerted the nurse, who confirmed he was going.
“My husband was sleeping on the hospital floor, so my mum gave me Thaxton and woke Tony up so we could hold Thaxton while he passed away.
“For me, it was oddly peaceful in a way, but still devastating. I was so afraid he was going to suffer, but he was able to pass in his sleep.
“A lot of the time after is a blur. I spent some time at my parents’ house, and I slept with one of Thaxton’s receiving blankets, but I don’t remember much more than that.
“We’re not guaranteed anything. We’re not promised healthy babies, we aren’t promised a tomorrow. We need to appreciate everything because we don’t know when our last hug or breath will be.”
Caitlin also spoke about the pain yet excitement she felt at finding out she was pregnant for a second time, as well as the stigma surrounding infant loss.
“I was totally not expecting to become pregnant again, especially so soon,” Caitlin added.
“I thought it was going to be negative, but the test was positive and it was a bizarre moment of both excitement and fear. I cried briefly, scared for this baby’s health.
“Babies are three times more likely to have congenital heart disease if a parent or sibling has it, so I was so stressed for the anatomy scan, but I knew I couldn’t change anything. Tony and I just kept praying and hoping for a healthy baby.
“We went straight to maternal foetal medicine for our anatomy scan, and our ultrasound tech told us everything she was looking at. When she got to the heart, she paused and observed, then said that she saw a four-chambered heart, and all the chambers were appropriately sized. I was overcome with relief and I burst into happy tears.
“Even though my baby passed away, I’m not contagious. I still want to be checked in on and involved in other people’s lives. I want to know that you remember my baby because Thaxton will always be a part of our family, even if he’s not physically with us.
“There’s a huge stigma around infant loss. So many people who have experienced it are scared about the reactions they will receive, because the people who haven’t experienced often don’t know how to react.
“I think many people don’t think it will ever happen to them, or simply don’t know it exists. I was totally unaware of CHD until it happened to my baby.”
You can follow Caitlin and Tony’s journey through their second pregnancy as well as honouring Thaxton’s memory by visiting @cmerrill2018.