The essence of Diversity in Loss is to show variety in people’s experiences, with the aim of helping others to relate. One of the aspects that can impact people’s abilities to relate is that everyone’s experiences will be so varied. It isn’t just about being a ‘twin pregnancy’ and then everything else looking similar. I think Danielle’s voice here is a perfect example of this. She tells us about her twin boys, and how one of them received a challenging diagnosis in pregnancy that changed their care and forward planning completely…

Please welcome Danielle, Dylan and Danyl to the Diversity in Loss series…

In April 2017 we discovered we were pregnant with twins. Everything was going well, we were deemed low risk. After many scans and blood tests we were living in a blissful bubble and were excited to see what life would be like with three babies under two! Our oldest son would be 22 months old when the twins were due.

As we had many scans already and the babies had been checked for lots of things we went into out 20 week scan excited and slightly nervous because I am naturally a bit of a worrier.

Twin 1 – all the checks were carried out and everything seemed healthy. Twin 2- the same checks were carried out and then they scanned the heart and those words will stay with me forever. ‘I can’t see 4 chambers of the heart – the left side looks small’.

The second those words left her mouth my head was full of questions. How could that be? Three weeks earlier I had seen both babies on the screen. All looked well. I had listened to the heart beats. They sounded perfect!  

We had to wait three days until we were seen by specialists. They confirmed Twin 2 had a very poorly heart and it was from then on we were deemed very high risk – they didn’t think Twin 2 would survive the pregnancy. He had HLHS (Hypoplastic Left Heart Syndrome),  DORV (Double Outlet Right Ventricle), total heart block and holes in the heart. The pregnancy was touch and go.

We were given many options about our pregnancy and decided that we would carry on – we really wanted to meet our baby and we wanted to give his brother the best chance of survival.

Life was turned upside down. We had to attend weekly scans and start to put a care plan in place for every eventuality. We were told if Twin 2 survived the pregnancy he would probably live for three days. With this in mind, our local hospice stepped in. The plan was to go straight to the hospice after the birth and stay there until our baby died. I hated having to talk about my baby dying before he was even born but I had to do this to ensure he and his brother got the care they needed.

As the pregnancy progressed, Twin 2 remained very stable and we surpassed all targets and got to 37 weeks and 6 days. The twins, Dylan and Danyl, were born via c-section at RVI, Newcastle. Twin 2 amazed everyone. He had survived the pregnancy and the birth! The plan changed – we stayed in hospital for five days and then we were discharged home!!

Life was wonderfully chaotic. Danyl surpassed everyone’s expectations!! We all lived at home together for one whole year and ten precious days! I like to think he wrote his own story, he did his own thing in pregnancy, in life and in death.

I will be forever grateful we got to spend that full year and 10 days with all our boys at home. The memories we made are my most treasured! I will always be grateful to the hospice who provided so many services to my family and continue to do so in the form of counselling and plan therapy. I am grateful for the NHS who made sure we were involved in every single aspect of our care plan.

But (and I never ever thought I’d say this) I am so grateful Danyl’s heart condition was picked up in pregnancy. 50% of ChD’s aren’t picked up in pregnancy and this can lead to all sorts of complications. I hated knowing Danyl’s diagnosis at the time and it did make the pregnancy difficult. However, it did also mean we could plan for every scenario and ensure all plans could be followed as and when needed.

October is a hard month for us. It’s Dylan and Danyl’s second birthday – Dylan’s first birthday without his twin next to him. It is my niece’s first birthday and the day after Danyl’s 1st memory. All of this falls in Baby Loss awareness Week/Month too. So I’m sure it will be tough but I’m hoping by sharing our story others will feel less alone.

For support during or after pregnancy in relation to congenital heart defects, please visit Tinys Tickers, here.

One thought on “#DiversityInLoss – Having to talk about my baby dying before he was even born

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