"Our experience has opened our eyes to the amazing work taking place"

About: Barnsley Hospital / Maternity care Leeds General Infirmary / Cardiology Leeds General Infirmary / Maternity care

(as a parent/guardian),

At 37 weeks pregnant you are in the home stretch just waiting for baby to make an appearance but because of excess fluid I was put on weekly scans.

At the 38th week scan the umbilical cord reading wasn't what it should have been and so the sonographer at Barnsley hospital decided to do a thorough scan of my baby - unfortunately all was not well. She found that the baby had an enlarged heart. The doctors were called and I was admitted into the antenatal ward. I can't remember my consultants name it she was brilliant at a very stressful and upsetting time. They liaised with LGI and it was decided there was no immediate risk to me or baby and I was to be monitored at Barnsley overnight and transferred to LGI for further scans the next day. I had two midwives that gave me some amazing support - Timmie and Sarah. They were amazing.

The next morning I had a further scan at Barnsley with a senior sonographer/consultant that confirmed the findings from the day before and I was transferred to Leeds.

At LGI I had a scan with a cardiac sonographer and sat down with a cardiologist and a specialist cardiology nurse - they had to deliver some bad news. Our baby had a rare heart condition that is extremely variable in nature called Ebsteins Anomoly and as she had a severe case we could have an extremely poorly baby. She could do well but we also had to prepare ourselves for the worst. Both the cardiologist and the nurse were professional, empathetic but also extremely realistic. It was hard to hear but it couldn't have been handled better.

We then went for further scans to check the development of the rest of baby - the doctor was once again amazing. Professional and direct whilst having the right level of empathy. It was decided at that point that the baby would need to go straight to NICU and have prostaglandin when she was born however as I was an elective induction that I would need to wait until a cot was available on the NICU.

I had to wait 5 days - one other lady before me and 3 emergencies happened in that time. I kept going into the hospital for monitoring when I needed reassurance and the midwives/doctors were great. It was at this point I met Anna - a midwife on ward 44. She sat and listened to me as I cried and told her my fears. Fears about the labour - pushing my baby out to an unknown fate, afterwards if she survived but was severely poorly, if she didn't, the impact on my toddler at home. She never made me feel like she was too busy. She was my support when my husband or other family couldn't be there - she really made a huge difference to those moments which were the lowest of the low.

When a cot became available I had a midwife called Purdey - she was amazing as were the doctors and the other staff on the about ward. I gave birth to my little girl surrounded by doctors, midwives and nurses from the labour ward, neonatal, and anaesthetists. My baby was ok - she was alive and trying to breath. They made sure she was ok and then I got to hold her for a couple of minutes before she was taken to neonatal. I slept. When I woke the midwife (forgotten her name) helped me hand express and talked me through using bonding squares.

I was moved to ward 44 again where I stayed for 5 days. Anna continued to support me - as did the other midwives but Anna is the one I'll always remember.

My daughter was on NICU and the care she received was amazing. She did really well and after a stay on the cardiac HDU and ward she was able to come home after 13 days.

The cardiologist have been great the whole way through - talking through the anatomy of the heart, her condition, our options and their experience every step of the way when it's been needed. The counsellor on the cardiac ward has been available to us and has recently checked in to see how we're doing - as has the cardiac specialist nurse.

All in all, throughout the whole experience has opened our eyes to the amazing work taking place across numerous hospitals and departments. The communication has been clear, individuals have been professional whilst empathetic and the medical and emotional care excellent.