Part One: Diagnosis
For as long as I can remember, I have dreamed of becoming a Mum. There were times I thought it may never happen (biologically, anyway), especially as I entered my 30s and remained single.
However, in 2016 I began dating my now husband and things moved along quite quickly from there. We were engaged in December 2016 and married in September 2017. In April 2018, I couldn’t believe my eyes and was overwhelmed with many emotions when I discovered I was pregnant!
Everything was progressing well and normal with my pregnancy and we excitedly shared our long awaited news after our 12 week scan. We went for our routine 20 week scan and were looking forward to finding out the gender of our baby. Obstacle one presented itself at this appointment when we were told that our baby wasn’t in a good position to take all the measurements required and they would like us to come back for another scan in two weeks time. We did find out that our baby was most likely a boy.
Two weeks passed by and we returned. Our appointment went on for a duration of 2 ½ hours (what should take no more than 1 hour). I was sent on walks, told to try different positions, go to the toilet and come back… All the tactics to get the baby to move, you name it, I was asked to do.
Approaching the 2 hour mark, I could sense something wasn’t right. The sonographer was looking at the pictures on the screen over and over again and staying pretty silent. As I would try making conversation or asking a question, she constantly avoided answering. As I asked what would happen if the measurements couldn’t be completed today, she hesitantly answered we might need to come back again, followed by “i’ll be back in a moment, I just need to speak to the doctor”. Those words I’m pretty sure everyone knows are never good.
I remember laying there feeling so scared to the point I began feeling nauseous. A few minutes later, the head radiographer came in to have a look for herself and give us what information she could. She informed us that she was the radiologist that had analyzed our scans two weeks prior and whilst our baby still wasn’t in the best position, she had a bit of a better picture. What she found was a complication within the heart. She explained that she should be able to see four chambers of the heart and a white line, but she couldn’t see the four chambers nor the white line and this was cause for concern. Unfortunately she tried to call the hospital clinic, but it was the end of the day so they were closed. The next step was to call the hospital first thing in the morning. She told me to be prepared, they may want me to go in immediately. It wasn’t looking good at all.
David and I walked out of there and to our car holding hands but silent. When we reached our car, all we could do was hold each other, pray, break down, and cry. Now I am not an outwardly emotional person, but this broke me. We felt like we had just been hit by a truck. David held me in a tight hug comforting me as best he could and said the words, “It’s ok, we are in this together, we will get through this together.”
We calmed ourselves enough to be able to drive home and we contacted our parents asking them to come around. We wanted to talk it through with them in person and we informed the rest of our immediate family by phone.
The next morning when the hospital received the report, I was asked to come in, and so began a world full of hospital appointments! My Mum came with me (Oh my goodness, I couldn’t go through this without her!) and I was taken through triage and eventually into a room awaiting a doctor.
There wasn’t actually much they could do that day as more tests needed to be done. The doctor basically confirmed what the radiologist had said to us. We couldn’t know to what extent the complications were until we had further tests. He explained I needed to have what was called a fetal echo scan, which is an ultrasound that focuses directly on the heart and is done by a number of specialists. The result of this scan would determine whether it was a minor or major complication and whether my care would need to be transferred, or remain at our local hospital.
We went in for the scan exactly one week later. It was quite daunting as there were four different medical staff present for the scan. As we got settled in, we were told to be prepared for lots of talking and whispering amongst the medical team, but they promised us they would talk us through everything once the scan was complete.
They were 100% right! As I was lying there with my husband sitting beside me, we could hear them saying things like ‘We should be seeing this but we are not, can you see this? There should be this flowing, etc.” It was pretty clear that something was indeed wrong. Once the scan was complete, the nurse took us into another room. She let us know that they had found something and the doctor would be in shortly to explain.
A few minutes later the doctor walked in and pulled a chair over to sit down in front of us with papers in hand turned upside down. He turned the papers over and began explaining, “So this is what a normal heart looks like, and this is what your babies heart looks like.”
He began explaining a number of complications found within our little boy’s heart, the main one being a condition known as Hypoplastic Left Heart Syndrome. In terms we can all understand, it meant that the left side of his heart had not developed properly, so he had half a working heart.
Stay tuned for the continuation of our story.