My Baby’s Heart Defects: Sonny Lee’s Story

After Sonny Lee was born prematurely, doctors discovered he had congenital heart disease.  Here his mum, Nell, tells their story:

On the 12th December 2016, my world changed forever. I had my third child prematurely at 35+1.

Born at a tiny 1.5kg, we knew his path wouldn’t be easy. Then at 24 hours old, our precious boy Sonny-Lee was diagnosed with congential heart disease (CHD). He has Pulmonary Atresia with intact ventricular septum, hypoplastic right ventricle, tripartite configured ventricle and stenosis left and right.

We had no idea what was in store. Doctors originally told us they was unsure if he would make the 100 mile journey to the hospital that could save him.

We were shipped straight off to the Royal Brompton hospital in London. Our fight began.

The doctors tried ballooning, but at such a small weight it didn’t work. We had to wait and get him bigger. Finally, after six weeks, he was ready at 2kg. On the 18th January 2017 he went down for surgery. It was seven hours, of pure anxiety.

Then up he came, but had suffered a cardiac tamponade (the bag around his heart had been pierced, causing a tamponade). Ballooning was successful, but a stent was too dangerous.

Recovery was slow. But on 15th February we finally went home for the first time.

We then had two years of cath labs, and waiting, because he was just simply too small. And more problems were arising.

Then it finally came: October 12th 2018, surgery day.

Sonny LeeSonny Lee was one year old and thriving, but we knew he needed surgery.

A single repair was on the cards. But something amazing happened…The team of surgeons saw potential for a better outcome. They attempted a biventricular repair, because they saw a better picture from what had appeared in scans.

Sonny Lee came out 13 hours later and he was so poorly.

He had two cardiac arrests in seven hours.

And coming home looked further away than ever.

But in true Sonny fashion, he showed everyone his strong he was and recovered slowly but surely.

Thankfully he didn’t have any brain damage, but he did end up with vocal cord damage due to his arrests and the nurses and doctors keeping his body relaxed and safe.

He was so dependant on oxygen, no one ever knew if he would come off it. Until one evening he did it, that was it – we were ready to go home.

Three weeks later, we walked out the doors and made our way home.

We’re moving forward now.

In 2019, more surgery was successful to a point but it didn’t fully succeed.

But, I am so grateful for the attempt.

Sonny Lee is in main stream school and has now gained quite a little character. He is now talking and living without medication for now. He does rely on thickener to drinks and juices, to help put weight on, as he still only weighs 10kg.

He has two weekly nursing visits to weigh him and check his oxygen levels which currently are safe at 75%. (scary but it’s safe for him).

He never lets his illness beat him and has become the heart of a small community group.

Sonny LeeHis big sister and his auntie now travel the east of England teaching people about CHD. And they help families in hospital.

He has to return in March for further surgeries. But I will never forget the day I became a CHD mum.

It taught me about the real fight that goes on behind PICU doors.

I am so grateful to every single professional who has dealt with Sonny Lee because he is rather unique and special. Yes, he is declared palliative, but that purely means to me he he has a reason to live every day to the fullest.

His smile is infectious, and he is my special little man.

Find out more about congenital heart disease here