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little daffodils

Together For Yellow – HLHS – Danyl

Danyl’s Story

I found out I was pregnant with twins in April 2017. I was scanned a lot with it being a multiple pregnancy, but was actually signed off as low risk at 16/17 weeks pregnant. We had had growth scans, listened to their hearts and everything seemed healthy. Then at my 20 weeks scan they discovered twin 2 had a problem with his heart.

We were fast-tracked to be scanned at fetal medicine and cardiologists from other hospitals came too. They confirmed he had HLHS at this point. Meaning half his heart didn’t work properly, it was under developed (the left side that pumped oxygenated blood around the body).

From this point we were scanned every week and every week it was like they found another problem. We were advised to terminate because they were really concerned with me progressing with this pregnancy. After reading everything we decided we would go ahead with the pregnancy to give our twin 1, Dylan, the best chance at surviving. We would be monitored and obviously we had to Take our pregnancy day by day.

We had a plan for every situation should the babies have had to be delivered at different points. Towards the end of my pregnancy we had the plan of delivering the babies and then if all was well being transported to the hospice to receive end of life care for Danyl. We were heart broken that we were planning this but we knew the team very well by this point. Then at one of my last scans we were told Danyl was doing so well we may be able to take him home for a few weeks. At this point I asked again if surgery would be an option for us (even though I knew he would never be cured of his defects, surgery would have been palliative too) again we were told that they were very worried about our baby and he wasn’t even here yet.

So we went home to get our heads around the fact we may get to bring our baby home. It was at this point I let my mam and husband try and sort out things for the babies, I hadn’t allowed myself to buy them a single thing because we Genuinely didn’t know if anybody would survive. Anyway fast forward for their birth 12/10/2017 and they were both born and doing well. We were kept in for 5 days. It was so weird getting to know your babies and trying to be happy and grateful for them both arriving but signing DNR forms and knowing one would die.

It was really surreal. It was so scary bringing them both home. Looking at Danyl, he didn’t look poorly. He didn’t need any medical intervention etc and people were genuinely shocked when they saw him. Danyl was at home with us for a year and 10 days. Some days were a real struggle looking after 3 babies under 2 and 1 being seriously ill. We were prepped to go back to the hospice at any point and were told what changes to look for. Changes in feeding, nappy output, visually etc. None of these changes actually came and the day he died was actually just a normal day.

He had a routine check the day before and everything was his normal. Looking back I’m pleased I didn’t see a change. He didn’t look different, he didn’t need any of the drugs we were given etc. He just looked like he always did and he just fell asleep. We are now dealing with the ‘what happens next’ Oliver my eldest receives play therapy from the hospice and we are continuing with counselling etc.

 

 

HLHS – Hypoplastic Left Heart Syndrome is a birth defect, which affects normal blood flow through the heart. This is found during pregnancy when the left side of the heart is found not to be forming correctly.