Kitty’s pregnancy was a whirlwind – from finding out she was expecting twin boys with a rare syndrome to discovering that one had pulmonary stenosis. Here, Kitty tells us her incredible story of how her boys defied the odds:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
Our story began in June 2023 when my husband was told by a palm reader we would have identical twin boys on the 4th of April 2024. At that time, we had been struggling to conceive for over a year so we thought this was highly unlikely.
Fast forward to the 19th of August 2023, and we found out we were pregnant a month before our IVF treatment was due to start. Then, five weeks later, our miracle became even more heartwarming… we discovered we were having identical twins!
Unfortunately, at 16 weeks we found out they had a very rare syndrome, called twin-to-twin transfusion syndrome (TTTS) which only affects about 10% of identical twin pregnancies. It means one baby is a ‘donor’ and one is a ‘recipient’ which causes problems for both twins – one is getting too much nutrients and oxygen, and one isn’t getting enough. From this scan, we also found out we were pregnant with boys!
We later underwent laser surgery when I was 18 weeks pregnant. The procedure was done while I was awake through my tummy into the womb. It was performed by the surgeon who invented the procedure 30 years ago. I felt extremely lucky to have him!
The procedure aims to split the blood vessels going to the larger recipient twin, to give the smaller donor twin a chance of surviving. We were only given a 25% chance of survival for both twins… we knew we needed to try this treatment to save them and the surgeon did just that!
From this treatment, we knew it was a possibility that one baby could have organ complications. However, when I was 32 weeks pregnant, I went back to the hospital to have an MRI scan which thankfully showed no cause for concern.
At 36 weeks, I was booked in for an elective cesarean section, as natural labour could cause TTTS to come back. Unfortunately, my cesarean section was cancelled twice due to not having enough space and the fact I hadn’t been given steroids to help their lungs form as they were premature.
On the 4th of April 2024, (yes this is all really true!), at 4:30 am my waters broke. These cheeky twins couldn’t wait any longer and wanted to enter the world naturally on the date the palm reader predicted!
The midwife couldn’t find the heartbeat of twin one and I had serious blood loss, so it became a CAT 1 emergency and I was given a general anaesthetic to bring the boys into the world as quickly as possible.
It was a very traumatic birth which resulted in me hemorrhaging and causing a lot of stress on the twins. My husband wasn’t allowed in the room and waited outside patiently for the arrival of twin one. He then found out twin two had to be taken to special care.
Four hours later, I had woken up in recovery and was allowed to meet my boys. They both stayed in special care that night to have their blood sugars checked. Albie was born at 7:20 am weighing 5lb 2oz and Ernie at 7:21 am weighing 6lb 1oz.
The next day, they were both brought back to us on the ward and we were preparing to go home. At this moment, my husband noticed Ernie’s breathing wasn’t normal, so he called a midwife. The midwife took one look at him and rushed him off to resus while we nervously awaited the outcome.
Ernie had an echocardiogram, plus many other tests, which showed his oxygen levels were averaging 88%. He was diagnosed with pulmonary stenosis and needed an operation to put a small balloon into his pulmonary valve to help the oxygen flow.
Ernie was booked to have this operation at three weeks old, which meant we all got some time together at home before being split up. We decided it was best I stayed home with Albie to fully recover for his return while my husband stayed with Ernie at the hospital.
It was around this time that a fellow heart mummy friend recommended the ECHO charity to us. We were put in touch with them, and they helped us to understand what would happen in the following days. Without the support of ECHO, and the parents on the Tiny Tickers Facebook group, I would have struggled even more at home!
When the boys were 11 weeks old, we revisited the hospital for Ernie’s six-week check-up. Ernie and Daddy showed Albie and I where his bed was on the ward, and the boys brought some biscuits for the amazing staff.
It was so surreal to see the hospital that performed the surgery on my baby. We stood in the exact spot my husband used to call me from to update me on Ernie. The hardest time for us was being apart – times like that show you that support is what you need.
Today, Ernie’s oxygen level is at 100% which is amazing. His recent echocardiogram revealed the pulmonary valve and the tricuspid valve are both leaking a small amount of blood, which was described as mild. Ernie also has two holes in the right atrium which are currently stable. The issues with the valves won’t get better by themselves and will need replacing. All the time they’re mild they’re fine, but when they get to moderate/severe they’ll have to be replaced which will require open heart surgery. The two holes can be repaired through the groin under general anaesthetic. So Ernie’s future is still worrying but we can see the positives and he will keep having check-ups until we know the next step!
Our heart baby and his twin are miracles from the beginning, and we are so happy to be their parents!
It was thanks to ECHO that we came across Tiny Tickers and we are now able to share our story to reach out to other heart families!
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