IVF, Baby Loss and Patau Syndrome

May 26, 2023

IVF, Baby Loss and Patau Syndrome

Growing up in Ireland I remember my first sexual health class at the young age of 11. The boys were
asked to leave and the teacher went on to explain.

A. Aunt flow arrives B. You Bleed C. You Conceive

Infertility was never mentioned, periods can be light, heavy or painful was never discussed, getting
pregnant was as easy as ABC.

After some years of travel, my husband and I decided it was time to have a baby. After 8 months of
trying, I wasn’t getting pregnant. My mental health took a hit and we decided to come home to
Ireland. I went to a well woman clinic to have my painful periods investigated and also my fertility.
After expensive consultations and numerous prodding and scanning. We finally had some answers.
We were diagnosed with sub fertility and the only way for us to conceive was through IVF. This
diagnosis I think hit me harder than my husband. I thought I am a woman with a womb, I ovulate, I
have eggs why isn’t it working? What’s wrong with me?

People around me were getting pregnant and that really affected me. The guilt you feel for feeling
the way you do is torture. It adds layers and layers of emotions that you feel smothered by.
We began IVF in secret telling everyone we were on a waiting list but really starting straight away.
IVF was a great bonding experience with my husband. We got pregnant first round it felt amazing
such a triumph. We had never been pregnant before.

We had a 7-week scan to rule out ectopic which is IVF policy and paid for a private Scan at 10 weeks
because we were so close to 12 weeks the safe zone and wanted to tell people.
In Ireland during lockdown, they aren’t providing your first scan at 12 weeks you get called for your
scan at 14 weeks.

14 weeks came and we went. We had never heard the heartbeat before and it played for 2 seconds
before our hearts were shattered.

Our sonographer said our little bundle of joys brain hadn't developed like it should at this stage.
A consultant then confirmed the diagnosis and said the dreaded words that our baby had no
capability of life. I had cells taken from baby's placenta to send to a lab in London to find out what
had happened and was then told my options.

In Ireland it only became legal to have a termination in 2018. As we were further along, Consultants
had to meet and discuss our case for us to legally be allowed to have a Medical terminated (TMFR)
of our very wanted baby.

Our baby was born early and we finally became parents. This part I don’t think anyone is prepared
for. I was 14 weeks and they are asking us questions we never thought of or thought we would have
to think of such as burials, names, had we clothes for him.

Quick results came back after 3 days and also the day our sweet baby was born which said our baby
had Patau syndrome and he was a boy.

We waited a further 4 weeks to find out if his syndrome was hereditary or not as we have 4 frozen
eggs to think about too. Fortunately, our sweet boy’s condition isn’t hereditary some positive news.

I had a long journey after my TMFR I bleed for 9 weeks which was a constant reminder of my loss
and also a reminder I couldn't just go and try again that quick. It was going to be not only a physical
but emotional healing journey.

Patau Syndrome affect 1 in 5000 births. I had never heard of the condition before. I was extremely
anxious during my pregnancy thinking of miscarriages or missed miscarriage never had I thought of
this condition. Our nurse had never seen this diagnosis as it so rare. I want to talk about Patau
syndrome because I haven’t met anyone who has experienced it and I know there are people out
there who have.

If anyone experiences this type of loss be kind to yourself. Take every day as it comes. There will be highs and
lows. It will come in waves you may think you are on top of it all and the next day that wave comes crashing.
One thing that we did was went on a trip for a few nights and honestly was the best thing we ever did and
would recommend to everyone. A different city where no one knows, you can be out and about and cry and
no fear you might bump into a friend or family member. Journaling is also my saving grace.

All the best with your journeyAideen Hogan

Irish Claddagh ring I chose blue to represent my boy.


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