Transposition of the Great Arteries (TGA): Emilia’s Story
Louise and Ollie found out they were expecting another baby in December 2021. Incredibly, their baby was diagnosed with transposition of the great arteries (TGA) at their 12-week dating scan. This is their story:
In December 2021, we received an early Christmas present: two lines on a pregnancy test! We had already been so incredibly lucky to have had two healthy girls.
The day of the dating scan came, which in itself was an anxious time due to previous, recurrent miscarriages. As soon as the baby came on the screen with a beating heart, I was so relieved. I remember just trying to work out if baby was a boy or girl (super early I know!). It felt like the scan was taking a long time, but we kept getting told baby was super wriggly and they were trying to get all the exact measurements.
The sonographers swapped over. After a while, we were told they needed to get someone else to get the pictures and they seemed to rush out the room. Ollie asked me if I thought something was wrong. I said, “No they’d definitely be telling us if there was; baby just won’t keep still!”
The third sonographer started scanning and the focus was really on the heart. We were told to go into the counselling room next door. The room was small and just had a box of tissues of the table. I could tell this was not a room for good news.
They explained that they thought baby had transposition of the great arteries (TGA). We sat in shock while diagrams were drawn and everything was discussed. They told us all our options. I remember asking what people do in this situation. The doctor reassured me that this heart condition had very good outcomes in general – 98% of babies would be OK after surgery. At this point I remember losing it. I said that there is nothing worse than meeting, then losing your baby. How would you cope? The statistics of 2% seemed so large when we were just told our baby had a rare heart condition.
At that moment, we were offered a scan by a cardiologist who was, very fortunately, at our local hospital at the very right moment for us. She checked baby and confirmed that baby did indeed have TGA.
The first week after finding out was particularly hard – the unknown was so difficult to comprehend. The shock was wearing off and the logistics of everything overwhelmed us. The rest of the pregnancy was full of appointments. We always felt so looked after and so reassured. I remember that, at one visit, we saw the consultant, and she said how shocked her team was that baby’s heart condition was found as early as the dating scan. Little did I know at that stage that baby’s heart was merely as small as a grain of rice – how incredible is that?! I will be forever grateful to the sonographer who spotted Emi’s TGA that early. It ultimately saved her life.
During the pregnancy, I had a MRI to check baby’s heart. This revealed our baby only had a very tiny hole between the atriums, therefore they were almost certain she would need an arterial septostomy very swiftly after birth. We were advised to opt for a caesarean section, so the team would be ready to perform this as soon as needed. Although this was incredibly daunting to hear, I actually felt a sense of relief that we had a plan and we would be in the best place.
The day of the caesarean arrived. Surprisingly, although she would no longer be safe in my tummy, I felt so ready to have her. I was ready for her to get better, and every day would be a step towards this.
We were told she may come out blue and silent. In fact, Emi came out very pink and screaming her head off! Once they cut the cord, reality set in. Her oxygen levels dropped by 50%. The team swung into gear and ventilated Emi almost immediately. They bought her over and I couldn’t get my words out. I knew she needed to hear my voice, but it was overwhelming. I remember thinking, please just take her, please just get her better.
After a few minutes, she left, and I told Ollie to go with her and the team. She was then prepped for her first procedure, as expected, the arterial septostomy. A few hours later we had the phone call to say it was successful. Step one complete… she was going to be OK, she was in good hands.
The next few days were all a bit of a blur. On day two, I remember getting into the wheelchair, ready to meet her properly. She was in NICU, which was actually a really calming place. She looked so plump and so healthy – how looks can be deceiving. On day five, we were told of plans to do the big switch operation the next day. Although terrifying, this was music to my ears. They were going to fix her! We were another step closer.
The morning of the big day arrived. We got there early to give her all the hugs and kisses before she got wheeled away. Nothing will ever prepare you for that moment, you just have to keep faith.
That day lasted about ten years. Though, very fortunately for us, we had some amazing friends who were also at the hospital for their little boy. We met up for coffee and spent a while chatting. We will always be so grateful for those ‘normal’ chats.
After six hours, our baby was out of surgery. It had gone well and she was in PICU. We could head there in an hour once she was all set up. We arrived at PICU. All I can say is, I am eternally grateful for the pre-warning of what we were about to see. Our beautiful girl was incredibly swollen from surgery, had all sorts of wires attached to her and an array of machines beeping away. Ollie kept asking the nurse questions and she was super happy to answer and explain away! This was invaluable to us as it made the whole process easier.
Throughout her PICU stay, we were able to give Emi plenty of cuddles, despite all the wires. Emi had a few bumps in the road, as she struggled to get rid of the fluid, particularly around her lungs. It’s very common for fluid build up after surgery, Emi had just been unlucky it ended up surrounding lungs. She was on dialysis and had physio as she ended up with a partial lung collapse because of this. However, on day five it cleared up enough for her to safely come off the ventilator. A few hours passed and, unbelievably, she came off the oxygen too! I kid you not, the rate at which babies can progress is just mind-blowing! We were able to put her in her first little outfit and it felt so good!
The next morning, we were moved out of PICU. Hooray! The next few days on the ward were all about fattening Emi up – she had gone from 8lbs to 6lbs. Over the next few days, her monitors and NG feeding tube were removed. Once we established feeding, we were given the all clear to go home!
Our whole hospital stay was just short of three weeks from start to finish. We were (and are) incredibly lucky and Emi, since coming home, has gone from strength to strength. She is now eight months old, saying ‘dada’, rolling over, giggling, eating for England…. doing everything you’d expect a ‘normal’ baby to do. Even better, she has passed all her heart checks with flying colours.
We will never be able to thank the medical team enough. They are real-life superheroes and we count our blessings for our healthy girl every day. We know the road may not always be this smooth, but we also know she has been given the best possible start and trust that she will be OK.
Thank you for reading Emi’s story. I hope this will help you feel reassured throughout your own journey.
Find out more about transposition of the great arteries (TGA) here.
You must be logged in to post a comment.