My son's heart defect and surgery - Vicki's story

Vicki And Elijah�S Story Hero

After Vicki's son Elijah was born at 38 + 3 weeks, he was diagnosed with a serious heart defect that needed surgery. Here, Vicki tells the story of their journey through neonatal care and beyond.

Elijah was born at 38 + 3 weeks’ gestation weighing 8.12lbs, and everything was looking good. He was feeding, had done his first obligatory ‘tar’ poo and was sleeping. He was all ready for his next feed! This is when our lives changed forever. 12 hours after birth Elijah began to have ‘dusky episodes’, luckily in front of a nurse. This happened three times, and was over as soon as it started. He was wheeled down to NICU for assessment and I was taken to the ward.

I was woken up to be told Elijah had been examined; that he may have a heart murmur and they were admitting him for monitoring. When Elijah’s father Greg arrived we went down to see our baby – he was in an incubator hooked up to every wire, tube and machine. A lady was pumping oxygen into him. There were other babies, just so small compared to Elijah, next to him. The noise of the machines and the brightness of the room and flashing lights overwhelmed me – I fainted and had to be taken back to my room.

Later that day a consultant came to say Elijah had been scanned and had been diagnosed with Tetralogy of Fallot. Our child had a serious heart defect that could be life-threatening if he didn’t have open heart surgery to ‘repair’ it within his first year of life. Due to his heart condition, Elijah was not allowed to feed in case it put too much pressure on his heart, and they didn’t know how his body would cope. He was still hooked up to every machine you can think of – he no longer looked like my baby with all of those tubes and wires stuck on him.

The next morning I was again woken by the consultants saying Elijah had begun to have seizures. He had suffered a bleed on the brain which they were classing as a neonatal stroke. They didn’t know what effect this might have had on him and whether he would be disabled - they wouldn’t know until he reached (or didn’t reach) the important milestones.

It felt like our world was crashing around us. What was supposed to be the happiest time of our lives was cruelly being taken away. I was petrified my baby was going to die. I longed for them to be wrong, and I prayed that any minute they would let us go home and I could walk out of the hospital with Elijah in his new car seat. But that didn’t happen. I was losing my mind as I felt so helpless.

Then Elijah was slowly weaned off the medication and all the tubes and wires were coming out. By day three he was allowed to feed again – this was something I’d really pushed for, because I wanted him to be as strong as he could be. By day seven I discharged myself – I’d caught a cold and didn’t want to risk Elijah’s progress by giving it to him. The most recent MRI showed that the bleed on his brain had broken up – Elijah was no longer needing any help or medication and was doing well.

Starting my first days of motherhood in NICU wasn’t ideal. The staff were lovely and offered kind words and support. But I didn’t want this. I wanted my baby to be well, to be home. I didn’t want to face the fact that he had to have surgery and that he may die. But then I began to adjust to life on NICU and how everything worked on a day to day basis. The sights, the sounds, smells and the staff. I longed to be the other mums on the ward with their babies by their sides struggling with latching on. I wished I could face those struggles; instead I walked out of the hospital with my wash bag on the car seat – without my baby.

After nine days Elijah was discharged under the care of the NICU outreach team and we already had hospital appointments booked for him.

He went from strength to strength, reaching every milestone when he should, if not before. We finally got a surgery date for after I put him on the Great Ormond Street Hospital cancellation list. We went down for Elijah to have a full Tetralogy of Fallot repair via open heart surgery. Then 30 minutes before he was due to go to theatre it was cancelled. We were sent home. Two weeks later, however, the operation went ahead. Everything went as well as it could, and Elijah surprised the doctors by recovering so quickly we came home in five days.

I want to tell our story honestly in the hope it helps others. I want people to take hope from it, like I did when I scoured the internet reading surgery success stories. I struggled to cope with my baby being in NICU and that fact he needed surgery. To be honest I didn’t cope at all. I felt ashamed with how I was feeling and that I was tainting the first few months of Elijah’s life. I self-medicated; I didn’t eat or sleep, and I resented and became jealous of those who went in and had a baby and brought them straight home.

I became a recluse. Those first months were so dark for me. But now I want to help support and mentor other parents of babies who’ve been on NICU or who have a congenital heart defect to help them acknowledge their feelings and not be ashamed of them.

Elijah is now 19 months and is a fit and healthy little toddler. We’ve been discharged from the heart consultant until next year! It is likely Elijah may need one of his valve’s replacing when he is older, depending on how he grows, but for now we can finally put those first few traumatic months behind us.