By Alyce Collins
THIS BRAVE mother discovered that her son had a fatal heart condition at SIX MONTHS pregnant and required immediate IN-UTERO surgery to save his life – but he survived and is now celebrating his first birthday.
Investigator, Sara Toner (21) from Washington, USA, was experiencing a troublesome pregnancy in October 2017 as she suffered from hyperemesis gravidarum, severe morning sickness which caused her to lose 1st 3lb in the first trimester.
At the couple’s 20-week scan, Sara and her husband Ryan (32) were warned that they needed to see a paediatric cardiologist for further testing as their sonographer noticed some unusual developmental signs.
Sara had an anatomy scan as well as an echocardiogram before reviewing the results with a cardiologist at the local cardiac children’s hospital. The cardiologist explained that the couple’s unborn son had hypoplastic left heart syndrome (HLHS) and aortic valve stenosis.
Sara was 22 weeks into her pregnancy when she found out, and just a week later she underwent an in-utero operation to save her son’s life. Surgeons performed an aortic valvuloplasty in which a needle was inserted into Sara’s stomach, going directly into her son’s chest, through to his aortic valve. From there, a small balloon was inflated in his valve to open it up and allow blood flow.
In the weeks subsequent, Sara’s son had four more valvuloplasties and a thoracotomy to repair his aortic arch. Sara was monitored weekly and it soon became evident that the left side of the baby’s heart was starting to develop.
On May 21, 2018, Tyler was born, 7lb, much healthier than if he wasn’t operated on while Sara was pregnant. Without the in-utero surgery, Tyler’s survival rate was below 10 per cent, but the surgery increased that to 60 per cent.
“I found out I was pregnant in the beginning of October 2017 and initially my feelings were very mixed,” said Sara.
“Nonetheless we were thrilled for the new chapter in our lives, as both of us always dreamed of being parents.
“My pregnancy was difficult from the start as I suffered hyperemesis gravidarum, which is severe morning sickness. In my first trimester, I lost 17 pounds because I couldn’t keep anything down.
“When we had our 20-week anatomy scan, my original midwife didn’t tell me something was wrong, but instead just told me I needed to see a paediatric cardiologist for ‘further testing’.
“A few weeks after my anatomy scan, I was sent to have a foetal echocardiogram at our local cardiac children’s hospital. We met with the cardiologist after who told us my son had hypoplastic left heart syndrome and aortic valve stenosis.
“I was crushed. All I ever dreamed of was being a mother to a beautiful and healthy baby. I felt like it was my fault, even though it was confirmed that it was a completely random case.
“The first time we met with the cardiologist, she told me she wanted to send me to Boston Children’s Hospital as soon as possible for an in-utero surgery that could potentially save my son’s life.
“We had to raise funds in a week – enough to get us across the country for the surgery. My insurance approved the cost of surgery, but Boston Children’s Hospital doesn’t accept the insurance I had. We had to rely on help from friends and family to get there and back.
“His first operation was when I was 23 weeks pregnant, and it was an in-utero aortic valvuloplasty. He has also had four more valvuloplasties, as well as a thoracotomy to repair his aortic arch.
“They stuck a tiny needle through my stomach, directly through his chest and into his aortic valve. They blew up a tiny balloon in his valve as a way to open it up to allow blood flow.
“I was under local anaesthesia and they placed a curtain up, much like they do with caesarean sections. I could still feel all the hands on my stomach though and it scared me so much I had a panic attack in the operating room.
“They monitored me and my son closely and realised the left side of his heart was starting to form over the course of the following weeks. During that time, I was on bed rest, and still suffering hyperemesis gravidarum. We also had a doctor’s appointment almost weekly as they thought I would go into premature labour.”
Tyler was born in May 2018 and since then has continued to flourish, despite the instability of his health at times. Tyler had four surgeries within the first three weeks of his life, and two more over the next four months after. Sara admits that it was difficult to find out about her son’s heart condition as she wasn’t given the chance to cope, she was immediately planning surgeries.
Sara, who began sharing her family’s journey on Instagram earlier this year, wants to show other parents that fighting for a sick child is worth it and to be strong throughout.
“It’s terrifying. I never had a chance to grieve or cope. I immediately had to start planning the rest of our lives as heart parents,” said Sara.
“I don’t think at this point, over a year later, I’ve fully stopped to grieve the missed life of a healthy baby. This is my life now, but I’m still equally as blessed.
“I didn’t want to post our story on Instagram for a long time, but I learned how important it is to meet others going through the same thing. There’s a level of understanding and sympathy you simply don’t see from others.
“My journey on Instagram has only recently begun, but I’m still so proud of how far I’ve come with it, and I’m so amazed with the other heart parents of met so far.
“I want people to see that an unhealthy baby isn’t the end of the world. There are a lot more hoops to go through, but every second is worth it. You never ask to be a heart parent, but I’ve learned it gets bestowed upon the strongest.”
To see more, visit https://www.instagram.com/blogofaheartmom/