Ruby’s heart condition, transposition of the great arteries (TGA) was detected by a sonographer at her mum, Bryony’s 20 week scan. Here, Bryony shares their story:
(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)
In October 2022, we found out I was pregnant, and we were really excited to be growing our family. We already had a one-year-old boy called Hugo. We were anxious in the early weeks, as we had experienced a loss a few months earlier but thankfully, all seemed to be progressing well this time and just after Christmas, at 16 weeks, we found out that we were expecting a baby girl. We felt as though we could begin to relax and enjoy the pregnancy.
In January 2023, we went to our local hospital for the routine 20-week anatomy scan. During the scan, the sonographer seemed to be spending a particularly long time looking at the baby’s heart. He said that he was struggling to get the measurements he needed and asked if we could pop outside for 15-20 minutes to go for a walk and perhaps grab a coffee.
After we left, I said to my husband, Simon, that I hoped there wasn’t something wrong with the baby’s heart. When we went back into the room, I knew that something was seriously wrong just by looking at the faces of the sonographer and the trainee sonographer. He scanned the heart again and said that he was sorry to keep us in the dark but wanted to be sure of what was going on before he explained what he thought he was seeing. A few moments later, he told us that there was a problem with our baby’s heart, in relation to the position of the arteries and them being the wrong way round. In that moment, our world turned upside down. In between the tears we questioned whether our baby would survive and if so, what this meant for her quality of life.
We were immediately taken through to the Fetal Medicine Unit. We were told that our sonographer thought our baby had a congenital heart defect, something called transposition of the great arteries (TGA), which we had never heard of before. This meant that after birth, our baby would need immediate life-saving treatment and transferral to a heart centre. Then, open heart surgery within the first two weeks of her life to switch the arteries around, otherwise she would only be pumping deoxygenated blood around her body.
We were given a book with some information about TGA and congenital heart defects generally, a Tiny Tickers handbook and we were signposted to the Tiny Tickers website and Facebook online support group. I remembered seeing a Tiny Tickers poster in the scan room just before we received the diagnosis. We left the hospital in floods of tears and our heads spinning, not knowing what the future held.
The following day we went back to the Fetal Medicine Unit for another scan, where the TGA diagnosis was confirmed. That Friday, we met the cardiologists and our cardiac liaison nurse.
The diagnosis was “simple TGA” (which meant there were no other complications) although to us this felt far from “simple”. We were told to expect around a four to six week hospital stay, provided all went to plan.
The days and weeks followed in a blur and our heads were all over the place, but our family and friends couldn’t have been more supportive, and it helped that life had to continue somewhat as normal for Hugo.
I read the positive TGA stories on the Tiny Tickers website, sent off for the parents’ support pack and joined the Tiny Tickers online support group. I was also put in touch with a local TGA mum, and we met up several times during the pregnancy. This was a real lifeline, and gave us so much hope to see how well her little boy was doing.
We tried to stay as positive as we could and enjoy the pregnancy, knowing that while our baby girl was inside she was safe; it was when she came out into the world that her fight would begin.
We had frequent appointments and scans during the rest of the pregnancy to check on the baby’s growth and to see how her heart was developing. Fortunately, she seemed to be growing perfectly and no other issues were picked up during the pregnancy, although we couldn’t be sure of this until she was born. We met with cardiologists, neonatal consultants, nurses and midwives. We went on tours of the hospital and Ronald McDonald House, attended a hospital virtual coffee morning and I had weekly calls with our cardiac liaison nurse.
We were told that TGA was “incompatible with life” and that the birth would need to be a carefully planned procedure as “time would be of the absolute essence”. We were advised that our baby may come out blue and may not cry.
We tried to focus on the fact that, in the vast majority of cases, TGA babies go on to lead completely normal lives. We decided to opt for a planned caesarean section as it was the only way we could guarantee that everyone would be ready for her and that the specialist transport team would be ready and waiting to transfer her. They wouldn’t even start the section until everyone was ready and there was a bed for her on ICU.
Although it was such an uncertain and worrying time, and incredibly hard knowing I would be separated from my baby for the first 24 hours, we felt so fortunate to know about her TGA diagnosis in advance and we felt reassured that we were in the safest hands imaginable.
At 39 + 1 weeks, our beautiful rainbow baby girl, Ruby Seraphina was born via planned c-section to a room full of around 20 medical specialists. Although the room was busy, it somehow felt calm. The surgeons lowered the curtain for us to see her being born and she came out pink, crying, and weighing nine pounds. She was born to Beyonce’s song “Crazy in Love”! We cried tears of relief. She was perfect.
She was taken to the other side of the room to be immediately ventilated and put on the hormone drip (prostaglandin) as planned. She was wheeled past me, and I was able to see her for a minute or two and touch her hand before I was told she needed to go. Simon went with her, and the room cleared; I was left with the anaesthetist and the surgeons who finished stitching me up.
Simon’s best friend drove him to the heart centre once Ruby had left the hospital in the ambulance. All I could think about was whether Ruby was ok and how the journey was going. I was taken to the recovery bay where my sisters and best friend were waiting to keep me company. I was then moved to a ward with other women who didn’t have their babies with them.
One of the doctors came to tell me that Ruby had arrived safely at the other hospital and had been settled in ICU, which was a huge relief. We had thought that Ruby would require the balloon septostomy procedure to allow for sufficient mixing of oxygen, as the pregnancy scans hadn’t detected any holes in her heart, however they found after birth that she did in fact have a hole in her heart (atrial septal defect (ASD)) which meant that the balloon procedure wasn’t necessary.
The following morning, 24 hours after Ruby had been born, I was discharged and then we were reunited. As Simon wheeled me into ICU to see her, it was so overwhelming to see her attached to all the machines, the tubes and wires, and to hear the constant beeping. However, we quickly got used to it and it became our new normal.
The next day, Ruby was weaned off the ventilator and the prostaglandin was stopped. We were able to have our first cuddles with her at 54 hours old. After two days on ICU she was moved to the cardiac ward.
She started having donor and expressed milk feeds down her ng tube and we established breastfeeding. For the first few days on the ward, we took it in turns to stay overnight with Ruby and once she was breastfeeding, I stayed with her every night. It had felt unnatural leaving her on her own overnight in ICU. On the ward, we were able to hold her more and be more involved in her care, which felt slightly more like normal life with a newborn. We quickly got used to managing with all the wires and machines.
We were given a provisional date for her surgery (arterial switch operation and ASD closure) when she would be six days old. We had a discussion with a specialist cardiac nurse in relation to the operation and the risks involved, including the percentages and statistics, before we signed the consents. Although this was unbelievably hard to hear, ultimately, we knew we didn’t have a choice as Ruby would not survive without this surgery.
On the morning of her planned operation, Ruby was ready to go to theatre and we met with the anaesthetist in preparation, however at the very last minute before she was taken down, her surgeon had to deal with an emergency case and her surgery was postponed. Although we understood it was subject to emergencies and there being a bed on ICU, we had built ourselves up to that day and emotionally it was hard to take.
Her surgery ended up taking place exactly a week later, and in that time her sats lowered, meaning she was put back on the prostaglandin drip to keep her oxygen levels stable. Safe to say, it was an emotional rollercoaster. We were given a new provisional date for the surgery; the pre-op bloods and swabs were done again, as well as another updated heart scan. We met her new surgeon, who we had heard so many wonderful things about.
At 15 days old, Simon carried Ruby down to theatre shortly before 9am. We went in with her and stayed with her whilst she fell asleep. We didn’t want her to feel that anything was wrong, so we waited until we had left her before we fell apart in the corridor.
We knew she needed this surgery to fix her heart and felt confident she was in the best hands, but leaving her there was so difficult. It was a long day, while we stayed close to the hospital and waited for news. We went out for lunch to try and pass some time and couldn’t believe it when we saw her surgeon appear on BBC News (pre-recorded)!
I was so nervous when my phone rang at 3.45pm, but it was Ruby’s surgeon saying that all had gone to plan and she was absolutely fine. We cried tears of relief; she had made it through the operation and now we were on to the next stage of recovery.
When we saw her on ICU that evening, she was extremely swollen and covered head to toe in tubes and wires, but we were just so happy to see her again. Ruby’s surgeon was pleased with how the operation went and told us it was smooth and straightforward. As the surgery had gone so well, her chest had even been closed in theatre, which we had expected to happen a day or two after surgery.
Over the next few days, it was amazing to see the progress that she made. She took so many positive steps in the first 24 hours. Her drains came out, she was “deparalysed” and started back on expressed milk feeds down her feeding tube.
Just 48 hours after the operation she was extubated, more lines came out and the oxygen was weaned down. On the Sunday, three days after surgery, she was moved on to HDU while we waited for a bed back on the ward. On the Monday, she was back to breastfeeding again and she also tried expressed milk via a bottle. She continued to be on diuretics to help flush out the fluid as she was so swollen.
We moved back to the ward and the following day she was off the oxygen and airflow completely. After an ECG and heart scan, we couldn’t believe it when the doctor asked how we would feel about going home in the next couple of days!
They stopped her heart medication and turned off the monitors to normalise us for going home the following day. We even took her in the pram for the first time off the ward and downstairs to Costa, which felt amazing!
At 23 days old, we were going home! Ruby had her final lines out, and after an ECG and heart scan, we were discharged to go home without any medication. It was amazing to see her face properly for the first time, and her body totally free of tubes and wires. It was the best feeling to come home and to be reunited with Hugo, who loves being a big brother. Once we got home, Ruby piled on the pounds and went from strength to strength.
There are two songs that I played on repeat in hospital and will always associate with Ruby’s time there: Wires by Athlete (“You got wires, going in, you got wires, coming out of your skin… I see hope is here, in a plastic box… first night of your life, curled up on your own, looking at you now, you would never know”) and Mountain by Sam Ryder (“I am a mountain, and down in the valley below is all that I’ve overcome… I’m a fighter, it’s like I was born to be one”).
It was exactly five months from receiving the TGA diagnosis to bringing our baby girl home. Ruby was a superstar throughout and the reality of it was so much better than I had feared it might be during the pregnancy.
Ruby is the birthstone for July, which is very fitting as the 1st of July was her first day at home. She recently turned one and is thriving. She started nursery in January and is hitting all her milestones. She is such a funny, happy, cuddly, content baby who brings us so much joy.
So far, Ruby has had four check-ups and her cardiology consultant has described it as an “excellent surgical result” and her as a “picture of health”. Her consultant is planning for her to move to annual checks at her next appointment. Ruby will continue to be monitored for life, but in the vast majority of TGA cases there is no requirement for further treatment or surgery.
We have met so many amazing people since receiving Ruby’s diagnosis and the care and support we have received as a family has blown us away. While this experience has changed us forever and it was certainly tough at times, this is Ruby’s superpower, and it makes her even more special.
Looking at her now, it’s hard to believe what she went through in her first few weeks of life. And while she won’t remember it, (we certainly will!), her scars serve as a permanent reminder of her strength. If she can survive this, she can get through anything.
For those at the start of this journey, you have every reason to be hopeful; try to stay positive and keep the faith as these babies are incredibly strong and will continue to amaze you.
We will always credit early diagnosis with saving Ruby’s life and keeping her so well. We are eternally grateful to our original sonographer for having diagnosed TGA at our 20-week scan as it meant that both we, and the medical professionals, had months to plan for Ruby’s arrival and for a plan to be put in place for her to receive life-saving treatment within minutes of being born.
In recognition of this, we fundraised for Tiny Tickers at my baby shower and donated the money in our sonographer’s honour. We were told that had the TGA gone undiagnosed, Ruby would have collapsed at home in the weeks after birth, which just doesn’t bear thinking about.
Although 1 in every 125 babies are born with a serious heart condition, only around half of congenital heart defects are currently detected antenatally. This is why the work that Tiny Tickers do in relation to the early detection of heart defects, and supporting heart families on this journey, is so incredibly important.
We count our blessings every day for our precious Ruby, and we couldn’t imagine life without her. It was absolutely worth every second of the shock of the diagnosis, the uncertainty, worries and tears.
We will always hug Ruby that little bit tighter as we know how different the ending of our story could have been had her heart defect not been detected when it was. Instead, her story is just beginning.
Find out more about TGA and different types of congenital heart defects here.
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