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Matthew by Jo and Richard

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Our journey started unexpectedly in February on the eve of our daughter’s 2nd birthday. We found out I was pregnant. 

Although it wasn’t planned we had always wanted three children. We had two healthy girls aged 2 and 4 and life was ticking along nicely. At almost 11 weeks we had a scan and saw our baby kicking his arms and legs and sucking his thumb. We were told everything looked fine, so we allowed ourselves to become more excited. I was booked in for the nuchal translucency test combined with a blood test a fortnight later. The blood test measures the levels of the hormone free beta-hCG and protein PAPP-A. When the NT scan is combined with this blood test, the results are more accurate and the detection rate for chromosomal abnormalities improves to about 90%. However, we began to wonder if this was necessary. I had only been offered a nuchal fold measurement for my daughters. What would I do with the results? If we found I was carrying a child with Downs syndrome, what good would it do knowing during my pregnancy?

My husband suggested it was better to be prepared. In the end I looked on the Internet for reasons to have the combined tests and came across one piece of information that made up my mind, an awful syndrome existed which is incompatible with life called Edwards’ Syndrome. One woman had found out after her nuchal translucency scan and we were both sad for this poor lady. We did not know such a thing existed. My husband remembers clearly me telling him about this. After the nuchal translucency scan I was again told that everything was fine and that the nuchal fold measurement was very good. I was told if I had not heard the blood test results within 2 days then all was ok. Two days later I received a phone call telling me not to worry but my blood tests had been contaminated and could they repeat them.

Two days later I was sat at work having just told my boss that I was 14 weeks pregnant and then came the call. The phone call that was to turn our world upside down. The words “Hello Joanna, I am the screening test midwife. Are you teaching? Can you talk? .The good news is your baby has a 1:5400 chance of having Down’s Syndrome, however, they have found that there is a 1 in 20 risk of Edwards’ Syndrome. Do you understand what that means?” My head was spinning and yes I did understand only too well what that meant. I couldn’t really see any good news.

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The phone call became very confusing. I was told that if the baby did not have Edwards’ syndrome then he would not survive anyway as my hormone levels were so low that no-one could understand how I was still pregnant. That is why they had re-tested. I made a hasty phone call to my husband, Richard, to drop the bomb shell and asked him to arrange a private CVS that evening. I felt shocked and confused. I stumbled through questions and then went into auto pilot and continued to a meeting.

After the meeting I called the hospital and asked to speak to a consultant. I was told that I shouldn’t have been told that my baby would not survive and that I had a 19 out of 20 chance of having a perfectly healthy baby. Suddenly I had some hope but I was still very confused. I got on the train home and arrived at the clinic for my CVS. The fetal medicine consultant performing the test suggested that my odds were pretty good and that I should wait until my 20 week scan and not have a CVS. He placed the doppler on my stomach and again we saw our little baby kicking and punching, looking no different to our 2 girls on their scans. It was at this point that the atmosphere in the room changed with the words, “Who scanned you?” He had found a major exomphalus containing all of the baby’s abdominal organs, including his liver”.

He said that this was a strong indication of a chromosomal abnormality and that we now had to have to CVS. We realised at that point the CVS was simply to confirm that our baby had Edwards’. We then listened to the baby’s heart for several minutes to ensure he had survived the procedure. I felt like asking him to just turn it off as at that moment I just wanted the pregnancy to be over and was hoping that I would miscarry naturally.

I don’t remember sleeping much that night. The next 2 days waiting for results followed. The consultant had said to us that if it was Edwards’ we would have no choice but to terminate, and at the hospital two days later we were offered a termination on the basis of the exomphalus alone. On the Thursday before Easter we received the results. Our baby was a boy, our first son, and he had full Edwards’ Syndrome. I now wanted to do everything I could to protect my baby and had completely swung in my opinion. I had to choose between my 2 healthy girls or my little baby and I decided to write the following to friends as I could not face phone calls.

'I am sending you this email as I seem to be spending most of my time researching/ telephoning relevant people concerning Edward's Syndrome, so I am online a little more often than usual anyway and I am a bit too exhausted to talk on the phone.I am pretty exhausted emotionally as our heads are spinning with facts/ opinions and amongst it all we have to make the biggest decision of our lives. What I am finding is that this is not a decision that can be made before a diagnosis. I thought that if I got news such as this then I would terminate. As you are all parents you will probably have come across people at hospitals telling you contradicting things in general about your baby.
We have found that sometimes people have answered our questions when they really don't know the answer, and then we have gone away or spoken to another doctor and have been given contradictory information. This is confusing and upsetting, as we need to know that the decision we make now is one that particularly I can live with. I suppose what I wasn't expecting at this stage was to feel as much love for this little boy and fiercely protective of him, and this diagnosis does not lessen that. Therefore, since taking a step back from the medical 'incompatible with life', we have also looked into the human side of Edwards’ Syndrome. The hard facts are that our baby has full Edwards’ syndrome with an exomphalus, which means his liver and possibly more of his abdominal organs are growing outside of his body.
This would require major surgery and our baby would most likely not be strong enough for that. If our baby was one of the 50% to make it into this world, he would have a 50% chance of surviving beyond 2 months but 90-95% die within the first 12 months. We are seeing a fetal medical consultant and paediatrician on Thursday and have decided to make our decision one way or the other then. We spoke to a lovely lady at SOFT who really helped us think things through.
I would love to meet our little boy, even if for a few hours but there is no guarantee that if the pregnancy continued that this would happen. We are so used to living in a world where we can fix things but this is unfixable and our baby is ‘incompatible with life’. Even if he survived he would need to be kept alive and then we would have to make numerous decisions on how much intervention we would allow. Despite the sadness and the tears, there is hope. This little boy has touched our lives forever and now when I look at our healthy girls, I feel the luckiest person alive.’

We met with the fetal medicine consultant at the hospital, a person I really admire. She was the first person who asked some really pertinent questions, ‘What was holding us back from making a decision.‘ What did I want her to tell me?’ I told her we were 90% certain of our decision and she suggested that perhaps we would never be 100%. I had never thought of that before. I told her that I wanted her to tell me that my little boy would suffer if he came into the world. She told me that she could not tell me that but IF he were to make it then he would receive palliative care and never leave the hospital. He would be too weak to survive surgery on his exomphalus. On a practical note, how would I manage that? How could I be in 2 places at once with the hospital being 25 minutes away?

During that appointment I suddenly felt like the great burden I had carried around for 10 days was lifted off my shoulders. It suddenly felt like the kindest thing I could do for my son was to let him go. We had been watching a series on Great Ormond Street Hospital and a couple of things consultants had said ran deep. One consultant said that in treating the untreatable sometimes the treatable were not getting treated. The paediatricians at the hospital had offered to cancel their appointments for an afternoon and answer any of our questions. They had offered to ask around the country to find out more about Edwards’ syndrome as they had no experience of it. Again this did not seem right. If our baby was only to enter this world to receive palliative care then why should other treatable children have their appointments cancelled. 

This was the moment we made our decision - a decision between terrible and horrible. It was the decision that was right for us and our family. I had to fight my every motherly instinct to protect the life inside me and wanted nothing more than to go to sleep and wake up and it all to be over. Despite this, I could not stand the thought of my little one suffering because I did not have the strength to let him go. We had left no stone unturned and went home for the next 4 days whilst waiting being induced. I was very comfortable being pregnant by this stage. I could feel our little boy moving - the first fluttery, butterfly feelings.

Fortunately, the hospital staff were very kind during this distressing time. We were provided with a private room in the gyneacology ward. I was induced at 16 weeks and gave birth to a perfectly formed tiny baby boy who we named Matthew. He was brought to us in a little Moses basket and we had him blessed and spent time with him. The hospital staff were so kind and loving and helped to make such a dreadful experience bearable. The nurse hugged us as we left and shed a tear with us.

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Matthew was cremated in a private service and he will remain in our hearts forever. Following this terrible experience, we wanted something positive to come out of it and we wanted to do something to help other people who may find themselves in a similar situation. We considered the help, information and advice that SOFT provided to us during this time invaluable, and wanted to help SOFT continue to provide this support.

We decided to fundraise for SOFT by entering the British 10k run in London in July, and we started training regularly. Many of our friends and relatives sponsored us and we are glad to say that we completed the run together on 11th July. There were over 25,000 other runners raising funds for many charities, and we received great encouragement from the spectators as we ran. This uplifting encouragement, thoughts of baby Matthew, and the funds we were raising kept us going and we completed the run together in 65 minutes without stopping, something we had not managed in training.

 

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So 3 months on the rawness is lessening but the sadness remains. The hole in our hearts will remain for our little lost angel. But positive things have come out of our sadness. Many people’s awareness has been raised. Our little boy is a stark reminder to us of how precious life is and how everything can be turned upside down in one moment. We look at our 2 healthy girls and appreciate how fortunate we have been. Life continues and we live through a strange grief. Losing an unborn child often feels like an unspeakable loss. What memories do you have to chat about? However, we did create memories and those are very precious to us.

 Matthew was born at the start of the Bluebell season and by chance he was kept in the Bluebell room at the hospital. We made a posy of spring flowers for his casket and then we went on a walk in a country park after his funeral. This is Matthew’s walk. Our 4 year old talks about him. We have discussed where he might be now and to her he is sitting on a star. She chose the star next to the moon so that if he gets bored he can go and play on the moon. She gasped in horror at the thought of him falling off his star and decided we must get him a seat belt to keep him safe. So through our sadness we are fortunate to have the joy of our two young girls, but our little boy will remain in our hearts forever.

Within me
I said I had to let you go
But you tugged at my heart
For you were still within me.
I wanted to protect you
Keep you warm and safe
But I had to let you go
Even though you were still within me.
And that tug that you made on my heart
You took a little bit with you
A fistful
In your perfectly formed hands
And the hole that was left
Has filled with love
Endless
Overflowing
 For my love for you is always here
Within me.
To Matthew with Love

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