Life on the Cardiac Intensive Care Unit (CICU)

Misha spent nine months in the Cardiac Intensive Care Unit (CICU) at Great Ormond Street Hospital (GOSH) shortly after he was born. One year on, his mum, Millie, shares their story.

"Our son Misha was born perfectly healthy, but his sister contracted a virus and passed it on to me. Four days later, Misha started to get marble blue-ish skin and a temperature. We took him to the local hospital, but they thought it was just a virus and it might go away.

"During this time I got really sick so I was also checked into the same hospital - I was on one floor and Misha on another. It was at this point that my husband’s brother came and said that I had to go downstairs to see Misha. I started panicking and when I reached him he’d crashed and was actually dead for two minutes. Thankfully, the doctors managed to resuscitate him and he was sent to Great Ormond Street Hospital (GOSH).

Transferral to GOSH

"As soon as he arrived, you sensed they knew exactly what to do, and only a few hours later, the doctor said Misha had to go on ECMO (extracorporeal membrane oxygenation).

"They say you should only be on ECMO for a maximum of a month because of infections and clots. So they kept trying to wean him off the machine but his heart just wasn’t up to it. They told us we were going to have to put him on a transplant list.

"My husband was really upset. He couldn’t accept Misha wouldn’t get better, but the staff gave us the space we needed and we came to understand everything better.

Difficult decisions

"After about a month on ECMO, they said that we needed to take him off. We had two options – a risky operation to put him on a Berlin Heart, a sort of mechanical heart, that would give him a few extra weeks to find a donor, or to take him off ECMO and see if he could survive for a week or so and hope a donor arrived.

"We decided that if there was a possibility Misha could survive the operation, we had to give him that chance. When he went to the operation room, we just said goodbye through a waterfall of tears.

"For the eight-hour operation, the nurse came to see us periodically to let us know how it was going. We did a lot of fighting during that time – our parents were trying to comfort us but you’re so nervous you just walk round in circles.

"Finally, they turned the Berlin Heart on and it worked. When the surgeon came, I just hugged him like I’ve never hugged anyone before. The next day we got to see Misha and it wasn’t long before we could actually hold him. I can’t describe how happy I was.

"I think Misha was a month on the Berlin Heart, then a donor came. I remember thinking about the donor’s parents. For them to donate the organs makes them heroes in my eyes. The transplant operation was remarkably smooth and it was great taking Misha home – we laid him on the couch and he had the biggest grin.

Close family

"Misha was at GOSH for nine months. I didn’t leave the whole time in case something happened. We sometimes stayed in the charity-funded accommodation. But his sister was the one who suffered the most. She was coming to us at weekends but she was very little herself. Still now she gets very upset and you can see the difference the time apart has made.

"When it comes to my husband and I, the psychotherapist at GOSH, Harriet, who was fantastic, said some couples split up during such difficult times. We were the reverse – we grew much closer.

"The staff at GOSH are wonderful people who know how to talk to parents. The doctors and nurses aren’t just great professionals, but are amazing people. While I wish this had never happened to Misha, I’m glad I had the opportunity to meet these people.

"We hope Misha will grow strong. They give him 25–30 years as that’s how long the transplant lasts. But medicine is making such giant strides, who knows what they’ll be able to do in that time. If he grows to be better, I’ll be the happiest person in the world. I won’t need anything else."

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