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Multiple Cardiac Anomalies – TFMR

anonymous post

We were lucky, that’s what we thought. We had been convinced it would take us some time to conceive, but there it was, that first month, the tell-tale blue cross.

We were excited.

I downloaded all the apps and started tracking the weeks, updating my husband on what size fruit or vegetable matched the baby each week.

We told our family and close friends very early, and they were all equally excited for me.

The baby would be my mum’s first grandchild, my mother-in-law hoped it might be her first grandson (we have three beautiful nieces already).

The symptoms started relatively early on. I had terrible morning sickness and food aversions, but everyone told me this was a good sign that the baby was healthily growing inside of me, and that kept me motivated each morning as I ran to the bathroom.

At around 8 weeks, I had some very light spotting, so I called my GP who put me through to the EPU.

We were sent for an early scan to check everything was ok. I was terrified, but they confirmed that everything was ok – they could see the heartbeat, it was measuring correctly and the bleeding was ‘just one of those things’. I cried tears of relief.

At our 12-week scan, baby wouldn’t cooperate. She (we found out later that it was a girl) would not stop wriggling around, and no amount of star jumps, cold drinks or long walks could get her to move into the position required.

Eventually, our sonographer gave up, telling us, “The baby looks perfectly healthy to me, you’ll just need to pop back in next week to get the measurements and a more accurate due date.”

We got our photo and went on our way, thrilled that we had made it to the 12-week milestone and our little baby was healthy and happy, wriggling away inside of me.

We’d noticed on our notes that they had marked down ‘fetal attitude’ as being the reason that they couldn’t get the measurements, so we sent the photo to friends and family, announcing our news to the world and joking that she had attitude, ‘just like her parents’.

The following week we were back at hospital to have the scan done again. We weren’t worried at all, we’d seen our baby the week before and everything had been fine.

We were simply looking forward to seeing our baby on the screen again.

Our sonographer, this time, was much less chatty than the previous one.

Eventually, she stopped her work and told us, “I think there’s something wrong with your baby.”

We were left alone while she went to get a senior midwife and, honestly, I don’t remember if my husband and I even spoke in that time.

We’d both been hugely caught off guard.

The midwife explained that there was too much fluid on our baby’s neck and that there was also fluid on the baby’s abdomen, where there shouldn’t be any.

She said it was highly likely that the baby would have chromosomal issues and that they would need to conduct further testing.

We opted to have the hospital blood tests done first, before anything more invasive, as we knew the latter carried risk of miscarriage.

On the way home, I called my mum and explained through the tears what had happened.

My mum, ever practical, began researching straight away and by that evening had booked me in for a private Harmony test, which she had read would provide more accurate results than the hospital version.

A couple of days later, I went with my mum to have the Harmony test – another sonogram with a happily wriggling baby, followed by more blood tests.

It was the week before Christmas and I was told they would try their best to get me my results before Christmas day but, due to the time of year, it may be delayed until the 27th December.

That evening, the hospital called me with the results from the initial test, I was high risk – 1:4 chance of Downs, 1:7 chance of Patau and 1:14 change of Edwards. I was devastated.

Christmas was difficult. My husband and I spent Christmas day at home just the two of us. I still had bad morning sickness, so couldn’t eat much, and was prone to breaking down in tears.

On the morning of the 27th December, first thing, I received a call from the clinic telling me my results had come back low risk for everything – less than 1:32,000 chance of any of the chromosomal issues they tested for.

We were so relieved. It had all been a mistake, the fluid was ‘just one of those things’, there was nothing wrong with our baby after all.

I called up our hospital to tell them the result and they congratulated me on the wonderful news. They said they needed me to go in and have a chat with a consultant about our onward care, and that they would also book me in for a detailed cardiac scan, ‘just to rule out any problems there’. 

On that Thursday, we went to hospital, met the consultant, and had another scan.

She went through everything, checked all the baby’s organs (all present and correct) and told us that the baby looked healthy to her, she just couldn’t check the heart in detail.

We left feeling even more positive.

By this point I was 15 weeks pregnant and starting to show.

The next day we traveled to St Thomas’ in London for the cardiac scan.

Once again, our baby was wriggling around and wouldn’t get into the correct position. Our sonographer spent about 20 minutes trying but eventually told us she needed to get a doctor as the position was just too tricky for her.

In the meantime, I was to do more star jumps, walks etc. to try to move the baby. The doctor came back and we spent the next 30 minutes in silence, while she checked the baby’s heart in detail.

When she had finished, all she said was, “I’ve seen some things we need to talk about.”

We were ushered into a small private room, where we were joined by the doctor and a nurse, who proceeded to draw us a very simple diagram of a healthy heart.

They then drew a diagram of our baby’s heart, and the two were vastly different.

There were four separate issues.

Cardiac Anomalies:

  • tricuspid artresia
  • pulmonary artresia
  • hypoplastic right valve
  • and, a large hole

In layman’s terms, the lower right chamber of the heart had not formed properly, blood was flowing the wrong way through her heart, and the valve between the heart and the lungs was completely blocked so that no blood was travelling to the lungs.

They explained that there were surgeries they could do when she was born, but that they wouldn’t be able to cure her – any surgery would simply be palliative.

She would spend a considerable amount of her life in hospital, we certainly wouldn’t be able to take her home for several months after giving birth, and when we finally were able to take her home, we’d effectively need a nurse to live with us.

This nurse would be so much involved in our baby’s life that they would be like a third parent.

They couldn’t predict what her quality of life would be, but we were told that in all likelihood, once our baby reached puberty, she would go into heart failure, and they wouldn’t be able to do anything more to help her.

If we were lucky, she’d make it to her late teens/early 20s. We were unlucky, so it seems. They told us that to have multiple fatal cardiac problems is rare – they can generally fix most issues these days.

My husband and I were in agreement. We couldn’t bring our child into the world to suffer through so many surgeries, so much pain and so much time in hospital, just to watch her die so young. It wasn’t fair on her.

Honestly, it wasn’t fair on anyone. It was a Friday, so we had the weekend to think it over, but on the Monday we went to our hospital and began the process of our medical termination.

We met the consultant in the antenatal ward, surrounded by pregnant women waiting for their sonograms (this is something that I wish wasn’t necessary, and which makes the situation even harder than it already is).

We were given papers and I was taken aback as I hadn’t expected them to be abortion papers, to my mind an abortion is what you have when you don’t want your baby – we desperately loved and wanted ours.

I also felt a huge weight of responsibility when I realised it was just my signature they needed, not my husband’s.

Although we had made the decision together, being the only one signing the paperwork made it feel like it was my individual action that was ending this life within me.

That played on my mind for months, it still does. 

I opted to have surgery rather than labour – I didn’t have the emotional strength to go through the latter, and my husband was unsure about any benefit that would come from us seeing the baby once born.

He worried about me having that image in my mind for the rest of my life. Sometimes I regret this decision looking back, but I think it was the right one for us at the time.

I didn’t want this to be my first experience of childbirth and I don’t think I could have coped with labouring.

We were two days away from being too far along to have the surgery option, so I was rushed through and the next morning I was admitted to surgery. 

I cried the whole time, until I was put to sleep. I cried when I woke up.

My husband took me home and I spent the next couple of weeks hiding at home, trying to avoid anything to do with pregnancy or babies. 

I’m eight months out now.

I still cry and I think about our little girl every day.

Some days I feel overwhelming grief, others I am consumed by guilt, and some days I am more at peace with what happened.

One thing doesn’t change and that is that I have thought of our little girl every day since that positive test. She will always be our first child.

This story was submitted anonymously. If you are interested to share a story as well to help others, it can always be anonymous if you so choose.

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

Share your story by clicking above.

Add your angel to the remembrance page by clicking above.

cardiac anomalies tfmr