Congenital Heart Disease: Kirsty’s story

This week is Congenital Heart Disease Awareness Week. Today we are sharing Kirsty’s story. Many thanks to her mum Janet for sharing this with us.

‘Kirsty was born in summer 2001. When I was 24 weeks pregnant, an ultrasound scan showed Kirsty had a congenital heart abnormality. We were told she had a Ventricular Septal Defect (a hole in the heart). However we were also told there was a possibility she could also have a more complicated heart problem that may not show itself until she was scanned after birth. My husband and I already knew Kirsty had Down syndrome and this heart scan was a screening test that was done as approximately 50% of babies with Down syndrome have a congenital heart abnormality. Kirsty also had duodenal atresia, a blockage of her duodenum, which meant she would need surgery at birth. I had regular scans that were done to monitor Kirsty’s growth. I also had polyhydramnios which was excess amniotic fluid that needed to be drained as I got bigger and bigger as the fluid accumulated . The polyhydramnios was contributed to by Kirsty’s duodenal atresia.

I went into labour naturally at 37 weeks. When Kirsty was born in the early hours of the morning, the paediatric team were on full alert as they were expecting a floppy baby. However Kirsty came out screaming- I remember thinking ‘This baby is enjoying the comfort of swimming around and does not want to be taken away from her comfort zone’. Kirsty did have to be observed in the neonatal unit . Her duodenal atresia was repaired the same day.

As Kirsty approached 8 weeks of age, she started to look breathless and her skin looked mottled. We saw the heart specialists regularly. We knew she would need her VSD repaired however it came earlier than expected. Her heart was struggling to work efficiently, she was breathless and she needed surgery soon. The day before she was admitted,  as we bathed her, I remember looking at her chest, sobbing and feeling sad that she would be growing up with a long scar from the surgery. I was also scared of losing her.

Kirsty’s surgery took 4 hours and thankfully it was only the VSD that needed repaired. My husband and I sat in a cafe, waiting eagerly to be called back to our precious baby. Kirsty recovered well and was home in a week. As she recovered, her voice, her kicks and her cries got stronger – she looked so well.  Kirsty continued to grow well and wasn’t far off in reaching her milestones as she got older. She started to walk at the age of 2.  Kirsty had regular cardiology follow up appointment till she reached 15. Neither her heart condition nor the surgery has impacted her in a negative way.

As recently as 30 years ago, people with Down syndrome did not  have surgeries to repair their heart defects. The assumption was people with Down syndrome did not live long and had a poor quality of life and the choice of surgeries were not offered. My husband and I are grateful to the medical staff at Great Ormond Street who looked after Kirsty so well. Yes, Kirsty’s scar is still there but it doesn’t trouble her, she knows she has had surgery and she never attempts to hide it. It is fading, but fading or not it is a symbol of resilience.’