Blu’s Story

Blu’s heart defects were diagnosed at his mum, Charlotte’s, 20-week scan. Here she tells their story:

As many of my close friends and family already know, due to my various health conditions and surgeries, tests, diagnoses and treatments, I was told in 2019 that having a successful pregnancy was something I would never be able to achieve.

Because of this, learning I was pregnant wasn’t something to look forward to, but instead I awaited the hurt and disappointment to follow. I was taken into the Early Pregnancy Unit (EPU) and told I had TWO very healthy, normal babies growing away!

I was rebooked at ten weeks for a follow-up scan, to confirm everything was still going smoothly and to have, what should of been, my first proper look at my twins.

This was the start of my nightmare. I was told one of my babies had stopped growing. My next appointment was my 12-week scan, which would confirm whether baby number two had pulled through.

Sadly, the doctors confirmed that I had lost one of the babies. Despite the heartbreak, I still had hope that my remaining baby was strong enough to get through the next six months. Up until this point, I’d kept my pregnancy to myself and a handful of people, but I felt this was the right time to tell my family and very close friends.

From here to my 20-week scan, everything went as a normal as a pregnancy goes. During my 20-week anomaly scan, I could tell by the sonographer’s behaviour that something wasn’t right. He told me they had found some problems with the heart and this would be something a specialist hospital would have to look closer into.

I was transferred, where a cardiologist looked closer at the heart. One side of the heart was showing bigger than the other, but the reason why wasn’t obvious. A care plan for both myself and the baby was put together.

I spent the next 17 weeks having weekly growth scans and, at 37 weeks, was told there had been no growth for the past two weeks and baby was also still breech! I was taken to theatre and under general anaesthetic, baby Blu was born by caesarean section.

We were unsure how Blu’s heart would react to life outside the womb, so he was taken straight to intensive care and put on heart medication (Prostin) to keep his heart stable. The next two weeks were the worst time of my life.

Blu struggled to breathe for himself and his heart couldn’t cope without the medication, which meant the next steps would be surgery. I was told Blu had multiple VSDs (holes in the heart) and a narrowing of the aorta, meaning his body wasn’t receiving the blood it needed. Doctors told me they didn’t want to operate while Blu was so weak, so we held onto hope that he would gain the strength he needed.

That day never came. Blu deteriorated and was put onto a ventilator to take over his breathing. I remember looking at the cardiologist and asking him, “Is he going to die?” They couldn’t give me an answer. His future was completely unknown at this point.

Blu was transferred on blue lights to another hospital, where he stayed in intensive care in a coma. Surgeons made a plan for him and he was taken into theatre. Eight hours later, our little boy returned and we were allowed in to see him.

Seeing him on the other side of surgery was a feeling I can’t even describe. I was too nervous to be relieved in case anything further happened. We spent three days with him intubated in a coma, waiting to see if the surgery had caused brain damage.

I watched him open his eyes and look at me for the first time and that’s when I felt the first feeling of relief. Day by day, I saw him with fewer tubes as he became stronger. I had my first cuddle with him which was indescribable – I finally felt like a proper mother.

Blu was given the all-clear to go home, one day before he was a month old. He will spend the rest of his life having cardiology reviews and fingers crossed we will never have to go through more surgery.

Find out more about different types of congenital heart defects here.