Ellie’s heart condition, transposition of the great arteries (TGA) was diagnosed at her mum, Lauren’s, 20-week scan. After a long stay in hospital and lots of set-backs, she was discharged at 12 weeks old. This is their story:
We found out at 20 weeks that our daughter Ellie had transposition of the great arteries (TGA). I was induced at 39 weeks and she responded to the medication well. She did so well, that she took a cancellation spot and the switch was organised for when she was five days old. The day before, we were told Ellie had an intramural artery, meaning one of the coronary arteries was embedded into the aorta. Her rates of survival were reduced slightly, but the surgeon did his best to reassure us.
Despite the extra complication, Ellie had surgery and it was successful. We were so happy. We had a tough week in PICU for her recovery- she had pulmonary hypertension as well as chylothorax. She was on sedation, nitric and TPN (total parenteral nutrition). However, after 8 days we returned onto the cardiac ward.
We enjoyed Easter weekend, and planned to establish breastfeeding on the Tuesday after the bank holiday, however Ellie suffered a cardiac arrest on the ward. Miraculously, there just so happened to be an anaesthetist on the ward who managed to intubate Ellie, as she wasn’t breathing. Ellie then went to the cath lab, where she suffered another cardiac arrest, but they managed to stabilise her on ECMO (life support).
We visited our precious cargo in PICU after a gruelling day of waiting. She was cold, very sick and our world had shattered. But we had hope.
The surgeons told us they planned to carry out a coronary artery bypass graft (CABG) on Ellie and perform a LIMA (left internal mammary artery) to bypass the LAD (left anterior descending artery). This is something the hospital does everyday on adults, but not on babies. They compared her coronary artery to the size of an arm hair which they would have to bypass due to its size. We were so lucky the surgeon agreed to perform this incredibly difficult surgery, so much so that we named Ellie’s middle name after him.
The surgery was successful and Ellie remained on ECMO for five more days. She passed the low flow test and came off. In doing so, the surgeon saw that her heart had regained ‘full ventricular action’. He called Ellie a ‘miracle.’
We relaxed slightly the day after ECMO, which was a Sunday, however our world fell apart again on the Monday when they told us Ellie had necrotising enterocolitis (NEC). The next day the surgeons performed an laparotomy, while Ellie’s chest was still open from ECMO, as there was no time to lose. The statistics for this were terrifying and it was genuinely the worst day of my life.
However, Ellie got through that as well and had a stoma as a result. We didn’t care because she was alive.
The next month was spent recovering in PICU. Ellie had a bronchoscopy for a collapsed lung, she also developed chylothorax again, as well as needing a fluoroscopy for suspected and confirmed diaphragmatic palsy. But she worked hard to recover and we had the most incredible team looking after her.
We finally returned to the cardiac ward where we tried to establish feeding, however due to her stoma output she wasn’t gaining weight. So it was agreed that we would stay for another three weeks on TPN once more and wait for when the surgeons could perform an early stoma closure.
The weekend before the closure, I noticed Ellie’s heart rate was very fast, even though she was just sleeping. When the nurse took her temperature she said it was very high and Ellie was suffering from rigors. The medical team acted quickly and put Ellie on a course of antibiotics, as well as performing multiple blood, urine and stool tests, plus an eye swab and a lumbar puncture. After a rocky few days, it was confirmed Ellie had an infection in the Hickman line (which was being used for TPN) so it was out of use and locked with antibiotics.
Luckily Ellie responded well to the targeted antibiotics and was able to have the surgery to remove the Hickman line and close the stoma. Ellie recovered beautifully and we came home five days later, for the first time in 12 weeks.
Ellie’s experience has taught us to appreciate life. To be kind to others. And to spread awareness of congenital heart disease (CHD). We are changed people and are passionate about ensuring other people’s experiences in hospital with their CHD child, however long or short, are made as informative and as comfortable as possible.
Find out more about transposition of the great arteries (TGA) here.
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