Myself and my husband had been trying to start a family since mid 2021. We found out that we were likely to require IVF . After an initial referral to Gynaecology for further tests along with Covid delays we commenced our first cycle of IVF in April 2024 . A long wait ! The first cycle was unsuccessful. We were disappointed but not too disheartened as we knew that we had a second attempt.
We had a short break and then began our second cycle in October 2024.
I had the embryo transfer but unfortunately I suffered with a mild form of Ovarian Hyperstimulation Syndrome which causes bloating and fatigue and so was unwell for a few weeks. However , these symptoms subsided and I took a test two weeks after the transfer which was a strong positive. We could not believe it after years of trying .
I was so anxious leading up to my eight week scan with the IVF clinic.
However, the scan showed a tiny baby measuring correctly and a strong heartbeat. Both myself and my husband were elated. Our close family were delighted.
Next was my thirteen week scan . It was hard to get a clear view as my uterus is very retroverted. However, yet again a little baby appeared with a strong heartbeat. I had to come back however in two weeks for dating. Also, as the baby was in the wrong position for the Nuchal measurement I could not have the blood test for the Trisomies ( Down’s Edward’s and Patau’s). I was referred for the Quad Test ( down’s only ) which came back at 1 in 5,000. As we were passed the twelve week mark we told all our family and friends. I was given my due date of 28 th July at the fifteen week dating scan .
On 13th March at our scan at twenty weeks and four days everything changed.
We were told at first that the ventricles on the baby’s brain were enlarged and that we had to have a rescan in a week’s time. We left the hospital that day still unsure of the outcome but hopeful.
However, the following week we were told that the baby’s stomach could not be seen along with one of his kidneys. They suspected a chromosome issue but could not be sure so referred us to Fetal Medicine in a hospital an hour away from us . At this point things seem to have taken a drastic turn for the worse.
Three days later we were seen by a consultant at Fetal Medicine who confirmed the previous scan findings and stated that our baby was extremely unwell . Edwards Syndrome was suspected and we were given three options : continue with the pregnancy and see what happens, further testing or termination. At this point we were in a state of deep shock , but the consultant had given us some time to think of options.
So we went for further testing. I had the NIPT test there and then and was told that the results would be available in about ten days. We then had an MRI scan on the baby’s brain .
Ten days later we returned to the hospital for the results which indicated a very high chance of Edward’s Syndrome. Even though deep down we knew it was still a massive blow.
We then decided to go ahead with an amniocentesis for a definitive diagnosis. It was such a strange sensation as the needle went in and I felt we were nearing the inevitable.
The results came back with an Edward’s Syndrome diagnosis.
After a few days of further thought, we both knew in our hearts that we had no option but to end the pregnancy.
With deep heartbreak, we made an appointment for the feticide procedure to put the baby to sleep. My husband was in the room with me and we were both crying, holding each other’s hands throughout the procedure.
We then had to attend my local hospital for labour and delivery forty eight hours after I had taken a tablet to switch off the pregnancy hormones.
That day in between of waiting was awful and not feeling the baby move any longer broke my heart.
The following day after being checked into the hospital and all preparatory work done, I started the induction medication at 11 pm. At 8 am the following morning my waters broke and after a thankfully quick labour ( thankfully with gas and air and morphine ) Oliver was born at 10.04 am on 18th April this year. My husband and my mother were by my side.
His little face was perfect , but all other signs that were visible on the scan were clear - a severely enlarged head, clenched hands, a club foot and more. He was severely unwell and his karyotype has since confirmed every cell in his body was affected by Trisomy 18. He would have lived perhaps days if not hours.
As I held him for those few hours and made memories I felt a rush of maternal love for my firstborn. He was our boy and we both loved him so much . We wished so much that this illness had not afflicted him but we did not want him to spend his extremely short life in pain.
Leaving him at the hospital was the most painful thing that myself and my husband have ever experienced.
We named him Oliver Gareth ( Gareth after my husband) which was apt as he resembled him so much.
We registered him and had an intimate immediate family only funeral which was deeply sad but beautifully done. The sun was shining for him on the day.
The pain and sadness of these last few months have been hard to describe . It has changed us forever as people.
However, we were so lucky to have huge support from friends and family . We continue to speak about Oliver every day and we want to ensure that his memory is kept alive.
It is so important that other parents that are in this dreadful situation are supported and know that they are not alone.
I thank the TFMR Mamas community so much for all the support that is provided. The support groups that I have attended along with the resources have helped me immensely in the last few weeks . It is so important for this community of people who had to make a ‘decision’ that no one should ever have to make.
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