Story by Marie,
In May 2016 at my 20 week scan we found out there there were some problems with my pregnancy.
There was very little fluid around the baby and he was small in size for his gestation. We were referred to see a specialist in feral medicine and was seen a couple of days later.
Following more detailed scans we were told I had intrauterine growth restriction and the most likely cause was a fatal genetic condition called triploidy. We were given three options. The first was a termination, the second an amniocentesis to check for genetic conditions and the third to carry on and do nothing. We decided to have the amniocentesis.
Thankfully the results came back to show there were no genetic defects and we were referred to the placenta cling at St Mary’s in Manchester. There we saw a specialist who explained the likely cause of baby not growing and the lack of amniotic fluid was placenta insufficiency.
It was explained to us that there was a high risk baby would not survive through the pregnancy and if he did there were many risks of complications. We were again offered a termination but we just weren’t ready to give up on our baby.
At this stage we were offered the chance to take place in a study called STRIDOR which was being carried out by Tommy’s.
The study involved taking a form of viagra or a placebo. To see if it made a difference to placenta function and helped baby to grow. We agreed to take part as any chance there was to help our baby survive was worth it. Part of taking part in the study meant having a scan every couple of days to check how the placenta was working and if baby was OK and growing.
We managed to get to week 29 of pregnancy with some growth but not much and then the placenta showed signs of failing. I was prepared to have a c-section the next day.
On the 5th July 2016 our little boy James was born at 29 weeks weighing a tiny 1lb 2oz he was very poorly and rushed to the neonatal intensive care unit. Later that evening when I was well enough to go and see him I was in awe of how tiny yet perfect our little boy was. We were told he was doing really well and although he was being ventilated he was trying to breath on his own.
Sadly when James was just a few days old he developed a brain bleed and were told it was very unlikely he was going to survive, we weren’t ready to give up hope though. As we sat by James’ incubator we got to see his little personality and create some beautiful memories. I longed to hold him but he was far to poorly, however the nurses looking after James were fantastic.
They taught us how to do James’s cares and change his tiny nappy and included us whenever possible in looking after him. When James was 5 days old he was christened on the ward with all his family there to be a part of his special day. Sadly 2 days later on the 12th July at seven days old James could no longer fight and we had to say goodbye.
I got to finally give my boy a cuddle and we held him and sang to him as he took his last breath.
Losing James has been so hard and I have suffered with PTSD, anxiety and depression since, however we are very grateful for the chances we were given by Tommy’s and by the team looking after us at St Mary’s hospital without there dedication and care it is likely we would never have got to meet our beautiful little boy at all.
Since losing James in 2016 we have experienced two miscarriages both at 11 weeks. It has been tough and at times we have talked about giving up on our dream of having a child to love and nurture and see them develop into a wonderful person with goals and aspirations and a heart full of love and kindness. However we’re not ready to give up hope just yet .
We are currently 9 weeks pregnant and trying to remain hopeful that this time our prayers will be answered and that come September we will have a beautiful, healthy, happy baby filling our lives with happiness and love. It is of course a very anxious time but we are receiving the best care we could ask for and hopefully will be under the care of the rainbow clinic at St Mary’s before long.
If there is only one thing you take away from reading my story and Lukas’s, please take away 'hope'.
"I hope our story gives couples some reassurance that there is light at the end of the tunnel because after 9 miscarriages we have our miracle on the way"
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