Jessica’s story

Louise found out her baby had a serious congenital 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.”

babyjessica6_zpsb8b9a0f8A 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.

JessicaJessica’s final surgery, the Fontan procedure, was carried out just after Christmas 2017. She recovered well and came home but sadly became unwell with several viruses a few months later and died in April 2018. She was six years old. Jessica’s younger siblings Sophie and Thomas both received extra heart scans while in the womb to ensure their hearts were developing normally. Thankfully they are both heart healthy.

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. Without that scan, the fetal surgery and being able to plan Jessica’s birth at a cardiac centre, we would not have had six and a half years with our beautiful girl. We are so thankful to all the wonderful medical team that provided such amazing care to Jessica throughout her life. Jessica was such a happy, smiley little girl who brought sunshine to all who knew her. We are so thankful for the time that we were able to have with her, although we will always wish we could have had more.”