Our first born and only son, Louis John Sivyer, was born sleeping on 9th June 2019. We chose not to continue with our pregnancy after finding out Louis had a serious congenital heart defect during our 20 week scan. Lucy gave birth to him at just under 22 weeks at Princess Anne hospital in Southampton.

Thanks to donations and charity, we were able to spend time with Louis after he was born. We have professional photos of him, his footprints and handprints. No one can say or do anything to make this pain better, but at least we have these things. We want to donate some money to the charities that offered these to us so that more parents going through this, or stillbirth, or neonatal death, can always remember their beloved child.

For our full story, please read below:

We found out Lucy was pregnant in February 2019. We've never been happier. We sailed through our midwifery appointments, scans and blood tests. There was literally no indication that something could be wrong with our baby, so we were looking forward to seeing our beautiful boy at our next routine scan.

When the time came for the 20 week abnormality scan, the sonographer couldn’t see Louis’ heart properly. We were referred to a consultant at the same hospital, who noticed a slight swelling of his aorta just above his heart. The consultant said it was probably nothing but since she had noticed something, albeit tiny, she would refer us to fetal cardiology in Southampton.

We were pretty relaxed. A few of our friends had been referred at the 20 week scan and everything had turned out fine. However, when we saw the fetal cardiac specialist, we were told that our baby’s heart hadn’t formed correctly. He had a very, very rare heart condition and wouldn't survive outside Lucy's body without serious medical intervention for the rest of his life.

Louis would have needed treatment, surgeries and long-term hospitalisation to try and help him survive. Statistics for babies with his condition are poor: 50% survive the first month of life, and it is very rare that they make it to young adulthood. It’s hard to say how severe Louis’ particular case was but his journey would have certainly included multiple high risk surgeries, a long time in hospital, and - if he somehow made it through all of that - a shortened lifespan, reduced activity, and risk of a fatal heart attack at any time.

From what we could find, there are no known survivors above their 30s with his condition. We asked a million questions in the doctor’s office - about transplants, in vitro surgery, breakthrough treatments, anything we could think of to soften this news and allow us to keep our baby - but all were met with grim outcomes. The doctors would fight to keep him alive if we wanted to do that, but the path ahead would be painful and unknown for all of us, but mostly for our baby boy. We were given two horrible options and had to make a heartbreaking decision. We chose to take all of the pain on ourselves so he would never have to suffer.

Lucy was induced on 9th June and Louis was born at 11:05pm. Our boy was tiny, but perfect. We still can't quite believe that his heart wasn't perfect too. Thanks to some incredibly kind and compassionate midwives who were trained in child bereavement, we were able to spend the night and the next day with our son.

In our darkest time, our midwife brought in a memory box from a charity called 4Louis. I remember thinking, 'What is this? I don't want anything - I just want my baby back." But as the two midwives looking after us started unpacking the box, we realised the value of everything that was inside. We were given things like a matching set of teddies (one for us, and one for Louis, which we then swapped when we said goodbye), kits to take footprints and handprints, a blanket for Louis, the book "Guess how much I love you" (which was read at Louis' funeral), forget-me-not seeds, and a memory card for all the photos taken of Louis while we were there. Another charity sent a professional photographer to come and take photos of us together for the last time. These things were beacons of light in the most difficult time of our lives, and they are the things we hold onto now. They are only available due to donations and fundraising by other parents that have gone through similar experiences. We want to raise money so that we can pass this on to other parents facing the same nightmare we are living through now.