My daughter's heart murmur - Katie's story

Katie's Story Hero

Katie's daughter Hope was born at 37 weeks weighing 4lb 8oz. Very shortly after her birth Hope was found to have jaundice and a heart murmur.

Our daughter Hope was born at 37 weeks and weighed 4lb 8oz. I was induced due to measuring small and after a very quick labour she was here - tiny but perfect. She was checked over by a neonatal doctor and we were told all was fine.

My partner Ben and I went up to the Cedar Ward at Birmingham Heartlands Hospital where we were told that due to her size she would need observations every few hours for 12 hours. I tried feeding her throughout the night but she would not wake for feeds and just wanted to sleep. The nurse said she thought she was a little jaundiced so took a blood sample to be sent off and explained in the morning she would most likely need to pop to the neonatal intensive care unit (NICU) for a little light therapy.

In the morning they came to take Hope down and explained she would be there for a few hours and then would come back up to the ward. I got dressed and waited for my partner to arrive so that we could make our way down to see Hope together. About 20 minutes after Hope had left me however, I was approached by a neonatal consultant. I started to panic because I work in a hospital so I knew something must be wrong.

The consultant told us a lot of information at once. He explained that Hope was very jaundiced and would possibly need a few days under the light therapy lamps. She would need a NJ tube inserted for them to feed her. He added that he heard a heart murmur and this would need to be kept an eye on. If the murmur hadn’t gone by the point of discharge we would need a scan on her heart. Hope was also struggling to regulate her own body temperature and would need to go into an incubator. They suspected an infection and had inserted a cannula for IV antibiotics.

This was all a complete shock. When my partner arrived we went straight to the neonatal unit. Hope was naked apart from a tiny nappy and screaming because she was hungry. I just wanted to pick her up and comfort her but couldn’t. I felt like the worst mum.

Once her NJ tube was fitted they started to feed her and she settled. We spent four days on the neonatal unit and every nurse was amazing. They worked non-stop the whole of their shifts.

Hope was never left alone. I stayed with her in the day and Ben would stay all night with her - sometimes popping into the relative’s room for a little nap if she was sleeping.

I started to feel very down on the maternity ward. I found it hard to sleep and would cry when I heard other mums with their babies. I wanted Hope back with me so much. I also missed my family because we’d asked them not to visit while Hope was poorly. Eventually though, we invited my mum and dad up to see us because I knew I needed to see them.

On day four, Hope was much better. She was starting to stay awake for longer periods of time and she was starting to take a bottle. Her blood results had come back and there was no infection so her cannula was removed.

By mid-morning they decided we could move up to Blossom Ward which is a transitional care unit. I was so happy to have my baby back with me - she was still on a heated mattress but was improving slowly. We stayed on the transitional unit for two days. Hope started to feed every three hours and was doing really well. The temperature of her mattress was lowered slowly every few hours and finally she was taken off it.

When the doctor examined Hope they could still hear the heart murmur so she was taken to receive a heart scan. She had two holes in her heart but luckily in the right place for them to heal over time. She would stay under the care of the paediatric consultant for her heart murmur to be reviewed and her weight gain monitored but we could finally go home.

Hope is doing so well and after 14 months of being under paediatric care she was finally discharged from their service. Her holes in her heart are now gone and they are happy with her weight gain. She is a happy and cheeky little girl, who may be small but always manages to be heard. We are so grateful to all the hardworking and amazing staff at the neo-natal unit at Birmingham Heartlands Hospital who looked after Hope in her early days.

We decided for our upcoming wedding in August that we would donate to Bliss on behalf of our guests as wedding favours. Having Hope in the neonatal unit was so stressful and I couldn’t imagine what other families with even smaller and sicker babies have to go through. We wanted to give back a little and help families in need get some support when they need it most.

If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.