Parker’s mum, Kira, shares their experience of navigating a newborn heart diagnosis, emergency surgery and the emotional challenges that came with it, including how support from others helped.
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
Our little Parker was born via c-section in December 2025. Shortly after his birth, he was diagnosed with two congenital heart conditions — coarctation of the aorta and a bicuspid aortic valve.
This came as a massive shock to us as a family. It was something I never imagined would happen, and I had no understanding of what either condition meant. The doctors carefully explained everything to us and told us it was very likely Parker would need open-heart surgery to correct the narrowing in his aorta to allow proper blood flow. Without surgery, it could become life-threatening.
They explained that babies are born with a duct (the ductus arteriosus) that allows blood to bypass the heart in the womb. This duct naturally closes a few days after birth. In Parker’s case, once it began to close, complications would start because the narrowing in his aorta was significant, causing pressure to build up in his heart.
Parker was transferred to NICU, where he was closely monitored. It was an incredibly difficult time, especially as we couldn’t stay overnight with him. He was then moved to the high dependency unit at the children’s hospital, where we waited for the duct to close. During this time, he had regular heel pricks, echocardiograms and constant observations.
We then received the phone call to say the duct was closing and he needed to start prostaglandin to keep it open, as the narrowing was severe. The following day, we were transferred to the PICU at Bristol Hospital, where he would have his surgery.
On 30th December at 9 am, Parker went in for open-heart surgery. At 12:30 pm, the surgeon called to say everything had gone well and that we would be able to see him shortly. Those were the longest few hours of our lives. The sickening feeling of not knowing whether we would be taking our baby home was unbearable.
In the days following surgery, Parker recovered well. However, I noticed his breathing seemed fast and raised my concerns with the staff. An echocardiogram showed he had pulmonary hypertension – high pressure in his heart. The doctors were unsure why, so he needed to stay a few more days for further tests.
Thankfully, by the end of the week, the pressure had reduced, and we were finally able to take our baby home. It was the best feeling in the world.
It’s still hard at times to manage the worry and stay positive, but Parker is doing really well. We hope and pray he will continue to grow into a strong, happy little boy.
As a family, it was hard to navigate looking after two children – one in hospital and one at home – over Christmas and New Year. I found it extremely difficult at times because I felt like I was letting my other son, Presley, who was only 18 months old at the time, down. Missing Christmas, snow days, and New Year made it even harder, and I often felt like I had to choose between my children.
The guilt was overwhelming, and I really struggled. Thankfully, I had great support from family and friends.
Once we settled back in at home, I joined the Tiny Tickers under-2s support group, and connecting with other parents in the same position was incredibly comforting. I finally felt understood and validated in my feelings.
You must be logged in to post a comment.