‘It felt like none of this was happening to us; like we were watching from the side’ – Jasmine’s story

Everything was going well with my pregnancy until a routine scan at 24 weeks showed a bubble of air in Lucas’ bowel. The doctors thought that he had probably just swallowed some amniotic fluid but they continued to scan every two weeks.

Then at 31 weeks, we were told Lucas had duodenal atresia, a rare condition that prevents food and fluid passing from the stomach into the intestines. We had to come to terms with the fact that he would need to have surgery when he was born.

Unfortunately there was more bad news to come when, at 34 weeks, doctors found a hole in Lucas’ heart, and shorter than expected femur measurements. Despite the risk of it bringing on premature labour, my husband Ben and I were advised to have an Amniocentesis (a test to check for genetic or chromosomal conditions) as there was a high risk that Lucas had Down Syndrome.

The nurse called early on the Thursday morning following the test and broke the news to us that Lucas had Down Syndrome. I cried for two days but our family really rallied around us. It was Ben who said that we needed to get back to being excited about our baby’s arrival.

The most important thing now was to get ourselves ready for what we knew would be a difficult start for Lucas.

So the next week, we had an induction with the hospital in Cardiff where I was due to give birth. I met with the amazing team of surgeons and had a tour of the neonatal ward. The plan was for me to go in a week before my due date so that I would be there ready for the birth.

But Lucas had other ideas. At 36+2 weeks, I started having contractions. Lucas was coming quickly and there wasn’t time to get to the hospital I was due to give birth at. We went to our local hospital where my waters broke at 9.00pm. Ten minutes later, Lucas was born.

Ben and I were so happy to meet our son but knew we faced an anxious night. The hospital wasn’t able to carry out the surgery on Lucas’ bowel so while we spent the night next to the incubator, the staff called round other hospitals to see if anywhere could take him.

Fortunately, despite needing some help breathing, Lucas was well enough to wait until the next morning to be transferred to Cardiff for his operation.

He was in surgery for the longest three hours of our lives. It was hell. We hadn’t slept and, as a parent, it’s really hard to imagine your baby having surgery when they are so tiny. The doctors reassured me that they had carried out lots of successful operations on babies half Lucas’ size.

The nurses also kept me distracted by having me practice expressing with a knitted boob. Ben went bright red – he stayed by my side to be supportive but I’m sure he would rather have been anywhere else!

When we finally got to see Lucas, it was scary to see all the tubes but I remember thinking how neat his little bandage was. It felt like none of this was happening to us – like we were watching from the side. Looking back it was the best and worst time of our lives.

We were told that Lucas’ surgery had been successful but we would have to wait to see if another operation would be needed due to the amount of scar tissue.

For the next four weeks, we travelled to the hospital every day. That time was made more bearable by the support of our family and the hospital staff.

As hard as it was to travel to the hospital every day, it gave us time to breathe. My mum was amazing too, making sandwiches and filling our freezer. You can really forget to look after yourself when your baby is in the neonatal unit.

A week after Lucas was born, I started getting flu symptoms and my milk ducts were blocked. I ignored it as I was so focused on Lucas but one of the nurses sent me to get checked out. It turned out I had mastitis and was put on antibiotics. I’m so grateful to her for spotting this – otherwise I might have become so unwell that I couldn’t see my baby.

After four weeks, Lucas was well enough to be transferred back to the local hospital and we started to prepare to take him home.

Lucas was struggling to latch on so I was visited by a breastfeeding specialist who was such a huge help.

We also found out that he had an underactive thyroid and would be on medication for the rest of his life. But we knew it was nearly time for him to come home and we couldn’t wait.

Lucas was finally allowed to go home on Christmas Eve.

It was the best present seeing the family have their first cuddle with him. There were a few scary moments in those first months when he was struggling to keep milk down and it looked like he might need to go back to hospital. His Down Syndrome means he has a weakened immune system so I was really worried by this.

There was also the possibility of more surgery for the hole in his heart. But after six months, this closed up by itself. We were so relieved that Lucas wouldn’t need more surgery and we haven’t looked back.

I know that Lucas will always need extra support from me but I feel confident that he will have a good quality of life. He’s now a big brother to Jake, thriving in mainstream nursery and eating everything in sight.

I really believe that having a sick child changes who you are. I never thought I’d be working for a children’s disability charity and blogging to raise awareness of Down Syndrome. We are so proud of our energetic little boy.