Toddler thriving after undergoing lifesaving heart surgery at just nine weeks old
Baby Charlotte underwent major surgery at our Children’s Hospital to patch a hole in her heart when she was just nine-weeks old.
She was diagnosed with Complete Atrioventricular Septal Defect (AVSD) during mum Rachel’s 20-week scan. She was seen by the Fetal Medicine team at our Women’s Hospital and was treated on the Neonatal Intensive Care Unit (NICU) before she was strong enough for surgery.
Rachel, from Rugby, said: “We were so terrified knowing something was wrong. “She’s our first child and we weren't expecting anything like this.
"We were seen by Dr Harris in the Fetal Medicine team and he was so kind and explained everything to us. He even drew out a diagram of the heart so we could fully understand.
“He told us that she’d need surgery but there was a good success rate. Even though we heard these positives we were still so worried.”
Rachel was scanned regularly by the Fetal Medicine team to monitor her baby's heart and the new parents tried to prepare for life on NICU before Charlotte arrived.
At 33 weeks pregnant, Rachel went into labour and welcomed baby Charlotte, who was taken to the NICU until she was strong enough to undergo surgery.
Rachel said: “It was a really rocky start. Because she was born premature she didn’t weigh as much as we’d hoped, so we were trying to get her stronger and bigger for surgery.
“The first few weeks were a total whirlwind. We were brand new parents and she arrived early and had the heart condition, so we felt really out of our depth.
“She looked so fragile, we were almost scared to be holding and touching her, but everyone was so good at getting us involved in her care as much as possible and encouraging us to have skin-to-skin contact.”
Charlotte spent the first six weeks of her life in the NICU until she was transferred to the Paediatric Intensive Care Unit (PICU) at our Children’s Hospital for her surgery.
Rachel added: “She was still so tiny but she was so poorly, nothing else was working and she just desperately needed this surgery. We spoke to her consultants, and we all felt it was time.”
When she was just nine-weeks-old, Charlotte faced a nine-hour-long surgery where the hole in her heart was patched over and the common valve was split into two valves.
Charlotte went into surgery at 9am and at 6pm her parents got the news that she was out of surgery. It was a success.
Rachel added: “It was the longest nine hours of our entire lives. “We were so relieved that it went well, but to see her covered in wires and bandages was such a huge shock.
“The recovery was long and bumpy. It was a few weeks until I was able to hold her for the first time post-surgery.
“It was such an emotional time; we were in our own little bubble where everything revolved around the hospital and her care. The ward became our home away from home.
We were there for Christmas and birthdays, and we celebrated our first Mother’s Day in hospital.”
Charlotte spent more than six months at the Children’s Hospital, where she battled numerous respiratory infections. Eventually, she was able to come off oxygen and when she was almost eight-months-old, she was able to go home for the first time.
Rachel said: “It was incredible but terrifying to go home. It was scary to have the support from an entire ward gone, but the team really helped us with the transition and over time we went from weekly appointments to monthly, and now every six months.”
Charlotte is now just over two-years-old and is still seen regularly by her cardiologist.
Rachel added: “After our difficult start to life, we feel so privileged to be able to do the little things with her we couldn't do in hospital like picking out what she wears and taking her to our favourite park.
“She’s just so incredible. She has so much personality and loves to sing. She’s always chatting away to us.
“We feel so thankful to everyone who played a part in her journey, from when I was pregnant to her being here with us today, we can’t thank everyone enough.
“We have a doll that has the same scar as her and a book to read to her to help her understand everything she’s been through, but she really is our little fighter.”