Helpline 0808 801 0322


Jake and Luca's story

28 June 2014

Blog post by Janine Hart

I was 25 weeks pregnant with twin boys when my waters broke at my local hospital. I had to be transferred to another hospital four and a half hours away in Oxford; this was such a stressful and emotional time for us.

My partner drove to meet me the next day as I was transferred overnight. He then had to drive the four and a half hours back home to collect some essentials so he would be able to stay with me when our babies were born.

I gave birth to our sons Jake, who weighed 1lb 11oz, and Luca who weighed 1lb 6oz, while my partner had driven home, so he wasn’t able to be there. The nurse took Jake and Luca both straight to intensive care, where they could help them with their breathing. My partner got back just in time to be able to say goodbye to Jake who was finding it hard to fight off an infection, and sadly passed away. It was such a hard time especially for him as he had he added stress of travelling.

Luca was doing ok but was fully ventilated and we were just taking it minute by minute. A few days after the twins were born we were called to say that Luca was going downhill and they were doing everything to help him. Luckily, after another few days he started improving and 11 days after he was born he was able to be transferred to a hospital one and a half hours away from home.

We got to hold Luca for the first time when he was three weeks old. He was fully ventilated for 59 days, had a bleed on the brain which they had to scan weekly, a PDA (Patent Ductus Arteriosus, a disorder where a blood vessel in the baby’s heart doesn’t close as it should) which luckily did not need operating on, and ROP (Retinopathy Of Prematurity, a disease of the eye which affects premature babies).

Luca managed to go onto CPAP (Continuous Positive Airway Pressure) after two treatments of steroids. He was gaining weight brilliantly and after three months in this hospital Luca was able to go back to our local hospital. We gave him his first bath and then established feeding. I was able to stay in a flat in the SCBU (Special Care Baby Unit) so I was able to have Luca with me all the time.

The doctors did a MRI scan on Luca to see where the brain was damaged after the bleed on his brain. Where it was damaged is the part that affects fine motor skills, so Luca would suffer from mild Cerebal Palsy to the left side. He also has large ventricles but we will not know if these will affect him until he is a bit older.

Luca was ready to go home after 118 days, three weeks after his due date. He came home on oxygen and lots of medication for his PDA. After around ten to 12 weeks he was able to be taken off the oxygen. He’s now 19 months old and is off all his medication for his PDA which has got a lot smaller. He’s still not sitting up unsupported but gets around on his back. He receives physiotherapy every week and goes to special playgroup for children with extra needs. We have been going to a baby massage class that was offered to us by a nursery nurse specially for babies who have spent time in the SCBU, which has helped us both so much.

Luca is such a bright happy boy. He is our little fighter and we know his brother is looking down at him and is so proud of him. We would like to thank everyone who helped us in the past and who is continuing to help us through our journey.


Help us by sharing this post
  • E-mail this story to a friend!
  • Tweet this
  • Facebook
  • StumbleUpon
  • Digg
  • Google
  • LinkedIn