Nevaeh-Rose was born with mitral valve regurgitation. Here her mum, Jodie, shares their story:
Nevaeh-Rose was born seven weeks early, weighing 5lb 2oz.
There were no concerns about Nevaeh at her newborn checks, only that she had a heart murmur, which doctors said would heal over within a few weeks or months.
Nevaeh struggled to put on weight and also struggled with feeding. Her breathing was always erratic, especially when lying on her back. After two weeks on SCBU, Nevaeh was allowed to come home. Everything seemed normal to me, besides her feeding, which was always a big struggle.
One night, my husband called me from the other room. Nevaeh had gone blue, limp and floppy. We called 999 straightway. The paramedics took Nevaeh straight to hospital. At this time she was five weeks old.
We had a very long wait in A&E and Nevaeh wasn’t monitored throughout the night. We waited for the doctors to come around in the morning, so I watched Nevaeh all night. At 11am, the doctor came and told us Nevaeh was suffering from reflux. We were sent home, but I wasn’t convinced reflux was the problem.
I kept calling the GP to see her, but nothing was done. Nevaeh slept all the time and got chest infection after chest infection. I knew it wasn’t normal. After months of struggling with all this, I received a phone call from the hospital, asking me to bring Nevaeh for an echo scan to check her murmur.
The scan took 40 minutes and afterwards the doctor said he wasn’t sure what was going on, due to a problem with the machine. He referred us to our local children’s hospital, which we attended a week later.
Nevaeh had another echo scan, and doctors discovered she had severe mitral valve regurgitation. We had to take her for an x-ray the same day and this showed Nevaeh’s lungs were full of fluid. Her liver was also enlarged, as the fluid didn’t have anywhere else to go.
Nevaeh started taking a medication called Furosemide straightaway. We had regular check-ups with the hospital literally every two weeks. There was no way this valve would work properly without surgery.
Nevaeh started on Captopril, to keep her blood pressure low as the higher her blood pressure was, the more her valve would leak. She then caught COVID, which delayed her surgery for nine weeks.
We eventually had a phone call to bring Nevaeh in the next day, ready for open heart surgery. Everything went ahead and, before I knew it, I was signing paperwork and her dad and I were walking her down to theatre.
The six hour wait was long – believe me – and as soon as we knew Nevaeh was out of surgery, we went straight to intensive care, where they were getting all the lines and cannulas in place. I thought walking away from theatre had been bad enough, but to see my little girl go through all that was the most terrifying thing ever.
The surgeon came and told us that the surgery went well, though they couldn’t stop her valve from leaking fully, it was 80% better. Things had been much worse than they had originally thought – her heart was enlarged to triple the size, as blood was being pushed backwards.
Within a few hours they started to wake her and were getting ready to take the tube out of her throat. Everything was one big blur; it was hard to take anything in. The tube was removed and Nevaeh struggled to breath. This was horrible to see – she was gasping, sucking in at the ribs and needed a nebuliser, steroids and oxygen throughout the night. She was very unsettled, which was to be expected.
The next morning her breathing calmed down, but they kept the nebuliser going and gave her something to help the inflammation in her throat. My girl was awake and aware, which was the best thing to see. She spent another day and night on intensive care, and then was moved onto the ward.
Nevaeh was doing so well, her morphine was reduced slowly and within a day she was just on paracetamol. Her eating and breathing improved and I just couldn’t believe the change in her within four days. She was able to sit up and go for walks with her daddy.
On the sixth day, Nevaeh was allowed to come home. This was very scary, as we were now in charge. She took her regular medication for a while, and was also prescribed iron tablets. We took her back a week later for another echo, to check the valve was still working properly. A after that, another scan showed that her mitral valve was good, but her aortic valve was now leaking. The doctor wasn’t worried, it was just a mild leak and the Captopri would help.
Nevaeh was 10 months old when she had surgery and she’s now nearly 14 months old and doing extremely well. She’s full of energy and learning new things, she’s not tired all the time and her eating has improved. She needs a check up every six months for now.
I can’t thank the hospital enough. It was the most stressful 12 months, but the outcome has been the best it could be.
If your baby has been diagnosed with congenital heart disease (CHD) we can help. Find out how we can support you here.