there is a hole in her heart.

It was Friday the 13 August, 32 weeks into pregnancy, we were at Dempster Head having pregnancy photos taken with the talented Hannah from Lister Imagery, when the phone rang. It was the call from our GP that we had to get to Perth within the week to have a tertiary scan at King Edward Memorial Hospital (KEMH). Baby Close had fallen off of the third percentile for growth and had started to flat line with an average size of 28 weeks gestation four weeks behind our gestational age. The ultrasound was booked for Friday 20 August so we packed our bags and headed to Perth, 750kms away from our home in the south east town of Esperance.

When we arrived at KEMH we attended the ultrasound, where a number of things were discovered, including the placenta flow elevated, fluid was low and blood supply to the brain and heart was low and there was no further growth. These factors meant we would needed a little help from steroids and our delivery was to be planned for early the following week once the specialist teams were back from the weekend, it also gave the steroids the 48 hours to work their magic. Steroids were given and with no clear plan in place for management of the baby or me monitoring the situation commenced, at one point a doctor in the Maternal Fetal Assessment Unit (MFAU) mentioned attempting to get us to 37 weeks.

Cardiotocography (CTG), part of the ongoing monitoring

Waiting was a horrendous experience, every second day when we went for monitoring, not sure if our little babe would still be holding on. Our confidence was lowered when it didn’t matter who we asked if there was a plan, they all had the same blank look on their faces. We had been referred to the “Gold team” of the fetal maternal medicine team, but had somehow ended up lost in a very overwhelmed medical system. So we were instead placed with the orange clinic, which is just a normal clinic if our catchment area was KEMH

On week into our Perth stay, on Friday 27 August, at the scan that we had requested to check for the flow and fluid levels, which they assured us was not required, a right sided aortic arch when checking the blood flow to the heart, which lead the sonographer to book us for another ultrasound on the Monday to investigate further. On the Monday, they were unsure what they found and an appointment was scheduled with a cardiologist for the afternoon of Wednesday 1 September. We meet with Dr Rosh a fetal cardiologist who performed an ultrasound on our little babe and identified a number of issues with her heart these included a large hole in the heart, a right sided aortic arch, and it looked like it had more fluid and was larger in the chest than what it should be. For the first time in our pregnancy it was mentioned that it was possible that our babe had a genetic defect known as DiGeorge Syndrome or 22q11 Deletion, a partial delete of the 22nd chromosome.

Dr Rosh mentioned that he would consult with the gold team ahead of our next appointment with them, we explained we were with orange team. He was a little curious as to why we weren’t under the care of the gold team and said he was going to speak to the Professor. It would have been about 5 minutes and he returned to the room to let us know that time had been made to see us immediately.

Professor Jan Dickinson is the Head of Maternal Fetal Medicine Service at King Edward Memorial Hospital. After spending about two minutes scanning the baby and asking us a load of questions to understand the current situation very quickly, she then said something along the lines of ‘this baby is ridiculously small and needs to be out now’. This cued a flurry of activity, with different people entering the room and the Prof providing the plan moving forward. There was discussion that an emergency c-section should take place immediately but given that it was already almost 6pm the decision was made to delay until first thing the next morning. This would give the specialist teams a chance to plan for the delivery of our precious girl.

So I was admitted to allow more fetal monitoring to be undertaken while also meeting with a number of teams that outlined what their plan would be for the arrival of our babe. An induced labour was not an option for us, we were advised that a c-section was the safest way to deliver our babe, as her anticipated as was 1600grams and she had been diagnosed with a critical congenital heart defect. We were told that she would be taken to the Neonatal Intensive Care Unit (NICU) immediately, would likely need life saving medical assistance, and it was very unlikely that she would be born breathing. The Professor mentioned that she likely had 22q11 deletion and the likelihood that she did have this rare condition. We were advised to have our families travel from Esperance as soon as possible, it was made clear that she might not survive those first 24 hours.

I remember clearly the feeling of not being able to breathe as I was in the lift transferring from MFAU to the Ward. Our world was spinning….

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