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Major Cardiac Abnormalities

cloacal exstrophy

I have found this website, and the Facebook support group, to be invaluable.  I had never felt so terrified, alone, and distraught, when I realised that my husband and I would have to terminate our little baby boy for medical reasons.  

I hope my story may help someone, as the stories on this website, and the support within the Facebook group, have helped me in so many ways. I will be eternally grateful for so many women, supporting other women (and men).

My husband and I have two wonderful little boys, however we have also endured 7 miscarriages, one ectopic pregnancy, and one pregnancy, which sadly ended in termination for medical reasons.

Our most recent pregnancy (that sadly ended up as a termination for medical reasons) was an IVF pregnancy.  There were no absolute medical reasons identified as to why we couldn’t have another successful pregnancy the “conventional way” (we had many, many tests and procedures), therefore we decided to commit a large chunk of the money we had in savings to IVF (money which I had received following the death of both of my parents).  

I am an only child, and always wanted at least 3 children…if not more! I’ve had two ceserean sections, therefore had weighed up all the risks of a third c-section…but we most definitely wanted to try for another baby.  

The IVF worked first time! I responded very well to the IVF medication, my husband’s sperm sample was great on the day!  We ended up with one embryo to be transferred a few days later, and 3 embryos in the freezer!  My husband and I were very, very, cautious, but had a glimmer of optimism, and hope, too.  

Having had so many pregnancy losses previously, we had told only a handful of close family and friends that we were pursuing IVF, and that we were actually pregnant.

I was so, so, happy to be having another baby.  I was so worried, however, that something may go wrong, therefore we paid privately for extra ultrasounds, and extra genetic blood testing –  everything came back fine.  I felt very, very, rough throughout this pregnancy- right from the start!  

Absolute exhaustion like I had never experienced in my life, awful constipation, and I *HAD* to nap throughout the day.  I was so glad to be a stay at home mum, as some days, I just went through the motions of the day, doing the bare minimum, dressed in my pajamas all day, until my husband arrived home from work!  

I thought to myself, “Well I am pregnant, aged 36 with two young children, the IVF progesterone pessaries make people tired, I have IBS, and hey, there must be lots of healthy pregnancy hormones buzzing around my body, making a healthy baby, and tiring me out!”

I then went for the 20 week scan at the hospital.  Due to the COVID19 restrictions, my husband was not allowed to be at the appointment with me.  I drove myself to the hospital, feeling reasonably optimistic that all would be okay (and we knew we were having a boy already due to earlier genetic blood tests).  

Then everything changed.
My life changed forever.
My heart will always remain a little broken and emptier

The scan was going very well (so I thought).  My little baby boy was dancing around, I could see his little feet and toes, his hands, his head- and I felt my heart swell with happiness at this wonderful little person on the screen in front of me.  The sonographer, wearing a mask, meaning I could not ascertain her facial expressions, suddenly said “I have to see if there is a doctor available”.

I lay on the bed in the hospital room, not letting myself panic, and instead, counting the ceiling tiles in my head, one by one.  The sonographer then kindly told me to get redressed, handed me a box of tissues as she could see I was starting to cry, and I was led into, what I call, “the room.”

This room had a few chairs, a table, and an even bigger box of tissues on the table this time…and unfortunately, I had been in this room several times before, when being told “unfortunate news” about my pregnancies.

It was then that an absolutely wonderful woman came into the room, named Sharon.

Sharon explained to me that she was a specialist midwife, and had extensive training to support mums and dads when there are issues with their pregnancies.

Sharon told me that there were extensive cardiac issues with our little baby boy –  a hole in the heart, a major blood vessel missing, and his heart was on the wrong side of his chest, and it was squashed up beside the other organs.

I just could not stop crying.  The tears were pouring down my face.  He was such an active little baby, and I could feel him moving and kicking around in my tummy as I cried and looked at the midwife in disbelief.  

How could there be something wrong with this little monkey, who made me cat nap all the time, and woke me up through the night with his disco dancing and kung fu moves within my womb?

The midwife advised me to phone my husband, and said that we were to come back to the hospital tomorrow to another scan with the fetal medicine consultant.  It was also explained to me that I would be going next week to a hospital 40 miles away for more specialist tests to be carried out on my unborn little baby boy.

I phoned my mother in law and my husband.  I was utterly distraught, and they were both so taken aback and shocked, that despite all the extra scans and testing we had had done, that lots of things cannot actually be detected until the 20 week scan.

I then left the hospital ward, and sat in the car crying for an hour.  I then drove home in a state of shock.  We hadn’t told our two little boys yet that there was another little baby on the way.  I had just been wearing oversized tops and scarves.  I’m not sure how my husband and I got through that night.  But we did.  Some how.

The next day, having spent the previous evening researching so many different scenarios etc. on Google, we drove to the hospital.  My husband was allowed into the hospital this time, given the gravity of our particular situation.  I could not even bring myself to look at the screen this time as the consultant scanned my big pregnant tummy.  I could feel the baby moving and kicking, and it was very, very, difficult to know that there were so many cardiac concerns in this little baby boy inside of me.

It was confirmed that there were major issues with the baby’s heart.  

Over the next few days, my husband and I researched extensively about the quality of life that our baby boy may have.  We realised that our baby may not survive the rest of the pregnancy, or even the birth. We also read extensively about the different kinds of cardiac issues that babies and children may experience. We were shocked to realise that the extent of the cardiac abnormalities that our baby had did not have a good prognosis.

Would our baby ever be allowed home?  Would he have to endure countless operations?  What would his quality of life really be like?  Throughout of all this heartache and debate, I could still feel this little baby boy moving around inside me and being as active as could be.

My husband and I finally came to the heart breaking and horrendous decision that we would have to end the pregnancy.  We did not want our little boy to suffer.  We reflected upon the words of other parents’ who had sadly been in a situation similar to our own…that we made the ultimate sacrificeto experience all of the pain, so that our child didn’t have to.

I was induced a few days later.  My GP had prescribed me diazepam over the weekend, as I was inconsolable; unable to sleep, unable to eat, unable to sit still, unable to stop sobbing my heart out.  

My husband was amazing at looking after the children during this time, and also looking after his heart broken wife.  I was genuinely concerned that I was having a nervous breakdown at one point, and it was only my husband’s words of comfort and support that got me through not self admitting myself into a psychiatric ward.

I was induced on the labour ward, at the same hospital where I had had my scans.  I won’t lie; the pain was excruciating. The baby moved down into the birth canal way before my cervix had opened at the same rate, therefore the pain in my csection scar was excruciating.  

I had extensive pain relief, however, and I finally gave birth on the toilet, with gas and air in the en suite bathroom, and a pain killing injection in my thigh.  The doctor had been called to ensure that my csection scar was not rupturing, and thankfully this was not the case.  

I was induced at 9am.  I gave birth at 1.40pm.  The baby came out still in the sac, and there were no signs of life.  I know it is controversial, and everyone does what is right for them, but I chose not see the baby after he was born.  I know he was in the room next door however, with a hat and a blanket on.    

I chose to remember my baby as a life within me, who had now gone elsewhere.  

I respect everyone’s choices as to what they choose to do in these awful and tragic circumstances. The midwife offered to take photos to view at a later date, or hand and footprints, however this was not what my husband and I wanted in our particular circumstances.

The staff at the hospital were amazing.  I had a specialist bereavement midwife with me throughout the whole induction and birth.  My husband wasn’t with me as he was looking after our other children.  I phoned him at 1.45pm to tell him what had happened.  I then had some food, my husband picked me up, and I was home by 7pm.  

The following days, and weeks, and months, have been filled with a huge complexity of emotions. There is absolutely no right or wrong way to deal with such a heart breaking and awful situation.

We have since had the post mortem results returned, and it confirmed that the cardiac issues were a random and tragic abnormality that occurred sometime during the early development of the baby.  All of the other organs were developing as expected, and there were no chromosomal, DNA, or genetic abnormalities identified.

I do know, however, that my heart has been changed forever more.  I will never forget this little boy who would have been loved and cherished beyond words.  We took all of the pain on board so that he would not have to suffer.

Only a handful of people know about what happened.  My husband and I are private people, and prefer it this way.  Perhaps when it feels like you can’t control anything in your life, that controlling who does and doesn’t know your business, provides us with a (false?) sense of control? Who knows.  

All I will say, is do what is right for you and your individual circumstances.  Listen to the medical professionals, do your own research, and listen to your heart.  

Sadly, you are not alone on this difficult and life changing experience that is Termination For Medical Reasons aka TFMR.

Take care xxxx

This is an anonymous guest post.

Stay at home mum, located in Scotland UK.

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