Living and coping with a sad news

No one can quite understand the pain of losing a child, unborn or alive, especially when he or she is so wanted, until you experience it yourself.

Four weeks ago, during my routine 12 weeks scan, we were told our baby has a condition known as ‘Edwards Syndrome’ or Trisomy 18. This is a rare but fatal condition which happens to 1 in every 3000 pregnancies. It is kind of common but it is a condition that people don’t talk or know about – until it happens to them or someone they know.

The last four weeks our lives have been turned upside down and filled with heartbreak, pain, confusion & the sense of helplessness. We were frustrated.  We tried our best during those few weeks seeking for answers & opinions from various medical professionals and religious experts, and the options presented to us were almost next to none. I was also extremely saddened with the fact that my husband nor our two boys (aged 6 & 7) had not had the opportunity to ‘meet’ the baby as they were unable to attend any of my scans. See, I bled throughout my pregnancy right from when I first found found out I was pregnant at 5 weeks + 3 days. I’ve ‘met’ my baby 3 times including my 12 week scan (plus two emergency scans due to bleeding) and witnessed his heart beating. Those were the moments when I started to ‘bond’ with my unborn baby. To see his heart beating at every scan was enough for me to instantly want to ‘protect’ and do what I can for him, even though he was still in my womb. I then booked for our family to have a scan at a private clinic as the NHS would only let you have one at your 12 week and the next when you are 20 weeks pregnant. At this point I had no idea why I wanted to have a scan. But the lady at the clinic was so understanding and sympathetic and understand the situation I was in so she booked me to have a ‘reassurance scan’ the very next day after I called. I was then 14 weeks pregnant and had cancelled a medical termination appointment booked by the hospital. I was not ready to say goodbye to my son. At the scan, we were met by the head consultant at the clinic and when he saw the scan he instantly told us the various abnormalities with our baby. My other children were there too. They knew what was going on and I’m glad they get to ‘meet’ their little brother. the consultant/doctor then suggested that he speaks to us privately in his office without the presence of our 2 children. There was no easy way but he told us exactly what he thinks based on what he saw. Coming from an experienced medical professional, when we were told that there is basically ‘no hope’ for our unborn baby, what were we left to do? I was even told to consider having a surgical rather than a medical termination, if that’s the decision I would eventually make, so that I do not have a traumatic experience. We left the clinic feeling heartbroken again. At this stage, we were two broken parents living in hope that everything was just a bad dream.

I even went back to the hospital asking for more questions. Questions like “how accurate is the CVS test?”, “what type of T18 does my baby suffers from? Full T18? Mosaic”?, “how different are the termination process at different pregnancy stages?”. In the end I got the midwife to agree for me to have another scan with a consultant at the hospital when I am 16 weeks + 2days for one final assessment of my son’s condition.

But there was nothing we could do to help our unborn son. It was a matter of either waiting for him to ‘pass away’ peacefully in my womb or if he survives to full term, passes away at birth. And we also had to live thinking if he actually survives birth, he will be severely disabled with many abnormalities and may live for a few weeks and in very rare cases Edward Syndrome babies can survive past a year. These are the harsh realities for babies diagnosed with this horrible condition and the agonising decisions are left to the parents, all the more difficult because there are no ‘good’ options.

We’ve been grieving the last 4 weeks in the best way we could, and today when we buried our son, proved to be one of the hardest, saddest and most painful things we’ve ever had to do as parents. Many don’t realise that at 16 weeks, a baby has already developed arms, legs, fingers, toes etc. A proper little person. And what a beautiful boy he was. This is one of the reasons why we wanted to treat him with dignity and requested to at least register his death somewhere. We could not even officially write his name down anywhere. According to the British law, babies born before 24 weeks cannot be registered. I find this quite appalling as knowing that babies by around 12 weeks have started to look like a proper baby, parents still not given the rights or privillege to have an official document to remember their baby. It’s as though a baby that dies before 24 weeks does not matter or treated like they never existed.
We believe that he is at peace now & is in being cared for in Heaven.
And with this I would also like to raise an awareness of Edwards Sydrome/ Trisomy 18 & the impact it has on families affected by it. No words can explain how anyone affected by it live through it. Whatever decision the parents made are so personal and individual to them. So was ours. We cry every night since our baby Idrys passes away sleeping on 3rd Feb 2016. For some reason, perhaps with the power of the AlMighty, we and the baby knew that was the day he was going straight back to heaven as I was meant to be admitted that day. The same day I also booked to have my final scan at 16 weeks + 2 days with a senior consultant at the hospital. Baby Idrys helped me giving birth to him painless, quick and trauma-free. I was not even given any medical termination to give birth to him. He knew. He knew he was loved but also knew we had to let him go. So he went before we made any moves to save us the heartache. Our hearts still aching for losing you my precious son.

We already planned to have a funeral for him and bury him a beautiful cemetary we found near us. As much as it broke our heart on the day we collected his body from the hospital right to the time we buried him (daddy did with the help of the cemetery official), we are glad that we have found a wonderful place for our baby’s final resting place. A comfort if nothing else to know that we have a place we can go to when we’re missing him so much.

Rest in peace baby Idrys. Mommy, daddy & your brothers love you so much. We are missing you terribly already.

For other parents out there who are affected by this heartbreaking situation, please remember there are many other parents in a similar situation out there. We re still grieving but my husband and I also welcome anyone affected by this to get in contact if you would like to have a chat or have any questions. Losing a child is never easy – unborn or alive. Take care & love each other.

More information on  Edwards Syndrome & Trisomy 18

People and charities I spoke to for support:



Children of Jannah –Children of Jannah