Kerry discovered her unborn baby had a heart condition, transposition of the great arteries (TGA) at her 20-week scan. After a tough beginning, little Raffy is now doing well. Read their story here:
At our 20-week scan, our sonographer was having trouble getting pictures of our baby’s heart. We were advised to go for a walk and have something fizzy to drink, to encourage the baby to move positions and to come back in an hour. We had no idea our lives were about to be turned upside down. On arriving back, a different sonographer looked at our baby’s heart and, after some time, told us she wasn’t seeing what you would expect to see. We were told there may be a problem with our baby’s heart, and we would need to be referred for a scan with an obstetrician.
We had a weekend of waiting and worrying, and on the Monday we went for our next scan. I still remember the silence being so loud as we waited for the words we were dreading: “I’m so sorry to tell you, there is a problem with your baby’s heart.” The obstetrician then took some time to scan the heart further, before telling us he believed our baby had transposition of the great arteries (TGA).
We were then escorted into a private room and joined by a nurse who drew us diagrams and told us how it could be corrected. He told us how lucky we were to find it now, rather than after birth, as our boy would need to be born at a larger hospital with a specialist team. I was devastated and had no idea how I was going to handle this. I went home and crazily googled everything to do with TGA, which led me to the Tiny Tickers website. I then ordered a family support pack and I immediately felt hope reading the stories of others. Whilst my husband and I had such an amazing support network, it was different hearing from people who had been in the same situation.
I was induced at the hospital and our little boy, Raffy, was born on the 6th of August. I had prepared myself for Raffy to be very blue and not crying, after having read some stories where this happened. However, once he was born, he let out the biggest cry. Raffy looked beautifully pink. We said to each other, “He’s better than we thought he would be, he seems so healthy.” The doctors then took Raffy to give him some oxygen and check him over. We were over the moon to have him here and he seemed to be doing well.
Half an hour later, the midwives received a phone call telling them Raffy was sicker than first thought, and we needed to go and see him. As they were preparing me to go, the midwives received another phone call advising us to get there as quickly as possible. They immediately began rushing, and that’s when I realised they thought our baby was about to die.
We arrived outside the paediatric intensive care unit (PICU) and a doctor explained that Raffy had no hole in the heart, so no oxygenated blood was able to mix. He was being starved. They were doing CPR and were going to attempt the atrial septostomy to keep the valve in his heart open, to get oxygen around his body.
The doctor went back into the PICU and we sat outside the room sobbing, preparing ourselves to say goodbye to the little boy we had just met. The team did CPR for around 20 minutes and, after what felt like a lifetime, the doctor re-emerged to tell us the atrial septostomy had been a success. We then had nine days of ups and downs in the intensive care unit (ICU) before Raffy was ready for his surgery.
The night before, his anaesthetist came to brief us on all the details of what would happen on the surgery day. It was at this moment, that the anaesthetist told us he strongly believed that, had Raffy not been born at this hospital, with their cardiac team, he wouldn’t have survived. Raffy was in the right place due to the early detection of his heart condition. We will be forever grateful to the amazing sonographers who performed my 20-week scan because our story would have been so different had they not referred us.
Raffy recovered amazingly from his surgery. We were told by our consultant that babies with TGA tend to cope fairly well before surgery, but they are likely to have some struggles with recovery post-surgery. However, Raffy decided to do it the other way around.
There were concerns of brain damage from the lack of oxygen, but once he was well enough, he had brain scans, which thankfully showed no lasting damage.
Raffy is 16 months old now and is just the kindest, funniest, and smartest little boy, who wants to make friends wherever he goes. We think all the attention he got from the doctors and nurses in the ICU had something to do with this!
Early detection saved our little boy’s life and we thank our lucky stars every day.