Heart Warrior

by Vikki Rooney

The second Lenny was born and I saw him for the first time I knew had had Down syndrome. He was perfect, breathed on his own, breastfed straight away, never had any time in the Neonatal Unit (NNU), his oxygen saturation test after birth was all normal. So when the doctors had said he would need a routine heart scan the day after birth just to check for any heart defects, as just under half of babies born with Down syndrome have some kind of heart condition, I just thought ‘well nothing was picked up at his 20 week scan so it will be all fine’.

The next day I went to the NNU for the consultant to do his heart scan and the doctor told me he had 2 large holes in his heart and only one valve – a complete Atrioventricular Septal Defect (cAVSD). This was the first time I broke down crying as my little boy would need Open Heart Surgery (OHS). I was devastated, thoughts ran through my mind; Would he survive? When would he need the operation? How long would he be in hospital for?

But as he was currently very well we were allowed to go home and Lenny was referred to our Local Children’s Hospital Alder Hey in Liverpool.

Lenny went into cardiac failure at three weeks old, he was struggling to breathe because of the build up of fluid on his lungs as his heart wasn’t working effectively. He was put on medication which worked well and the day he was 6 months old was the day of his OHS. I was told to expect a 1 to 5 week hospital stay so I aimed for three weeks.

On Wednesday 3rd October 2018 we walked him down to theatre at 09:00 and kissed him goodbye, I held it together but my husband was in tears as we walked away.  We had a 6 hour wait until the nurse called to say he was out of theatre and all went well, the operation lasted 4 hours and he had been in the intensive care unit (ICU) for 2 hours before they called us. I was told he would be ventilated and sedated for about 24 hours, but 3 hours after the operation he was waking up and trying to pull the ventilator tubes out, he was too strong for the sedation medication to work, so they had to take him off the ventilator. He didn’t seem in any pain.

I couldn’t stay with him overnight in ICU, so I stayed in the Ronald McDonald House and continued to express breast milk for him overnight. 

The next morning, Day 1 post surgery, I asked if I could hold him, and the nurse helped me pick him up as he still had two chest drains in and some wires monitoring his heart and breathing.  24 hours after the operation he was out of ICU and transferred to the Cardiac Ward. He was tube fed expressed breast milk, he slept most of that day.

Day 2 he was smiling again, his chest drains were removed, I was allowed to breastfeed him again, the feeding tube was removed and his big sister even got to hold him.

Day 3 he had a heart scan, all looked good, he just had one tiny hole at the bottom of his heart ventricular septal defect (VSD), but I was told this should close fully on its own. His dressing was removed too.

Day 4 Lenny was discharged home. He had monthly scans and after 6 months his little hole closed on its own. He is nearly six now and his heart is perfect and doesn’t need any further surgery, he has a check up every two years.