Jessica’s story

Louise’s daughter Jessica was born with Hypoplastic Left Heart Syndrome but a pregnancy scan revealed the condition before Jessica was born, allowing for doctors to undertake fetal surgery whilst Jessica was still in the womb. Her condition was continually monitored and Jessica began her course of life-saving surgeries immediately after her birth.

Louise found out her baby had a serious heart defect called hypoplastic left heart syndrome at her 20 week scan.

“The 20 week scan is an exciting moment for many parents – getting to see their baby on screen and perhaps finding out the gender,” Louise said. “For us, the 20 week scan ended up being one of the hardest moments of our lives.”

A fetal echocardiogram confirmed her baby’s condition, and upon meeting with the surgical team Louise was told that the severity of her baby’s heart condition meant that it was unlikely she would be suitable for surgery. In passing, the consultant mentioned that Boston Children’s Hospital carried out fetal surgery, but he doubted it would be suitable.

Louise and her husband pursued the possibility of fetal surgery and the medical team at John Radcliffe hospital in Oxford eventually agreed to attempt the surgery, providing Louise and her husband would accept the risks involved, primarily that they had never carried out the procedure before. Baby Jessica was operated on at 28 weeks to enlarge the hole in her atrial septum and improve the blood flow to the left side of her heart.

The surgery was successful but Louise was advised not to get her hopes up as the prognosis was still very poor. Her baby would need surgery immediately after birth, and so it was planned that Louise would be induced at 39 weeks and her baby transferred to a specialist unit.

Jessica arrived a week before Louise was to be induced and had her first open heart surgery, the first part of the hybrid procedure, at eight hours old. She had the second hybrid procedure a week later and left hospital after four weeks. At fourteen weeks old her Norwood procedure was carried out, and her Glenn procedure at seven months.

Jessica is now a bubbly and happy three year old who is doing very well at the moment, and it is expected that her Fontan completion will take place within the next year. Her younger sister Sophie received extra heart scans whilst in the womb to confirm that her heart was developing normally.

Louise says: “although our 20 week scan with Jessica was quite a traumatic experience, we are immensely grateful that Jessica’s heart condition was picked up at that scan. My original plan had been to have Jessica at home and without that scan, the fetal surgery and being able to plan Jessica’s birth at a cardiac centre, it is quite likely that our little girl would not be here today. We are so thankful to all the wonderful medical team that have provided care since the moment of diagnosis and continue to provide such wonderful care to Jessica today. Her future is, and will always be, uncertain but we thank God every day for her, live in the moment and enjoy all those precious times together.”

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