At their 20-week scan, Mollie and Chris were told their unborn baby had a serious heart condition. This is the emotional story of their brave son Murphy, and his journey so far:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
At our 20-week scan, my husband Chris and I were told that our baby boy had a hole in his heart. Scared and upset, I immediately burst into tears and asked, “What does this mean?”
We were very quickly referred to the specialist children’s hospital for foetal scans. It was there that we discovered our baby had not one, but three holes in his heart — ventricular septal defects (VSDs).
Fast forward to Murphy being born, and at just 10 days old, we went for a check-up, only to be told that Murphy had yet another hole — an atrial septal defect (ASD) — making it four holes in his little heart. We were told to go home and watch for signs that these holes were starting to compromise Murphy’s health.
Gradually, we started to notice that Murphy was becoming very lethargic, sweaty, and was working hard to breathe. He was also losing weight. We were given diuretics for him to take at home to help with excess fluid build-up, and then, at just four weeks old, Murphy was admitted to Evelina for the fitting of a nasogastric (NG) tube to help save some of the energy he was burning while trying to feed.
Three days after being admitted, Murphy caught parainfluenza, and within 24 hours, he deteriorated rapidly. His heart rate was over 180 beats per minute, and his breathing rate reached 94 breaths per minute.
The decision was made to stop his feeds, and he was admitted to the paediatric intensive care unit (PICU), where he was put on a CPAP machine (continuous positive airway pressure). This increases the pressure of the air breathed in to prevent airways collapsing — but just 12 hours later, Murphy was put on a ventilator to breathe for him. He was given IV fluids, continued his diuretics, and was started on a drug called Milrinone to help his heart function.
We were told Murphy would be put under anaesthetic for the insertion of the ventilator and would remain asleep until emergency surgery the next morning.
Parents aren’t allowed to stay in intensive care, and the wonderful Ronald McDonald House offered us accommodation. Leaving Murphy for the first time since he was born, alone in the hospital, was the hardest thing we’ve ever had to do — but we had a big day ahead of us.
At 6am the next morning, we arrived at the hospital. Murphy was about to undergo Pulmonary Artery Banding surgery — a temporary measure used for babies who aren’t yet big enough for full repair of the holes. A band is placed around the artery to restrict the excess blood flowing to the lungs.
I can’t thank the PICU nurses enough for capturing these devastating but precious moments for us on camera.
Murphy’s surgery was a success. After three days, his ventilator was removed and he was put back on the CPAP machine. The next day, however, the nurses discovered that Murphy had developed a blood clot in his left leg, and he was started on IV blood thinners (Heparin).
Unfortunately, that wasn’t the only issue — part of Murphy’s sternum had come apart where the surgery had taken place. Surgeons decided not to operate again and instead allowed it to heal naturally (which it did!).
After a good day, Murphy was able to come off the CPAP machine, and his Milrinone dose was weaned. After a week in PICU, we were transferred to PCCU (Paediatric Critical Care Unit) — a stepping stone between intensive care and the ward. We were making progress!
However, overnight Murphy became unstable again, and the decision was made to put him back on the CPAP machine and increase his Milrinone dose. Murphy was able to remain in critical care.
Five days later, Murphy was weaned off CPAP and onto OptiFlow. Two days after that, he was well enough to leave critical care and be moved to the cardiology ward.
On the ward, Murphy’s medications were changed to ones that could be administered at home via his NG tube. Over the next two weeks, his OptiFlow support was gradually reduced and eventually removed — and, finally, his blood clot had resolved.
Six weeks after Murphy was admitted to the specialist children’s hospital, we were finally able to take him home! He still has his NG tube, a number of medications, and many check-ups ahead while we wait for the day he is ready to have surgery to repair the holes — but for now, we have a happy, content four-month-old little boy.
Although this is a scary story to read, the professionals in this field are unsung heroes. Murphy was extremely well cared for, and we, as parents, couldn’t have asked for anything more from the specialist children’s hospital and Ronald McDonald House.
If you are going through — or about to begin — a similar journey, please know that these little ones are much stronger than you think… and so are you.
With love,
Mollie, Chris & Murphy xx
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