After years of infertility and IVF, Jen discovered their longed-for baby had a serious heart condition, transposition of the great arteries (TGA), at her 20-week scan. Here, she shares their story:
To see the two pink lines appear on a pregnancy test after years of infertility and gruelling IVF was one of the best days of our lives. We couldn’t believe it! Our fourth transfer had worked and we looked forward to becoming parents for the first time.
I was very cautiously optimistic throughout the early stages of the pregnancy, knowing there was no guarantee we would make it to full term. However, after the 12-week scan all seemed fine, I started to relax into the pregnancy and enjoy the experience.
Then we had our 20-week scan. This was the moment the bottom of our world fell apart. Both of us went into the scan incredibly naively; we honestly thought it would be a lovely scan to check on the baby’s growth and see it wiggling around and waving at us. I had booked back-to-back meetings that day, as I honestly didn’t even think in my wildest dreams that we would receive the news that was about to be delivered.
The scan itself was lovely at the beginning. The sonographer was so kind and chatty. Everything looked fabulous – head circumference growing well, all four limbs- check, all five fingers and toes- check. Everything was looking peachy.
Then the sonographer said, “Oh, can you wriggle your bum in the air a little so that I can get a good view of baby’s heart?” Thinking nothing of it, I did just that. Then I was asked to jump up and down. And I honestly thought, this little baby is going to cause us trouble, it’s playing hide and seek. We laughed it off with the sonographer.
Then the energy of the room changed. The sonographer’s face fell, she put down the doppler, turned to us in a serious manner and said the words that no parent wants to hear: “I’m so sorry to tell you this, I can’t get the three ventricle view. There is a problem with your baby’s heart”.
I wailed, held on to my husband and screamed, “No!” The sound coming out of me was unhuman. I went into shock, threw up and hyperventilated.
What did this mean? Was our baby going to survive? How was this happening to us after everything we’d been through? So many questions, yet so few answers at that stage.
The sonographer couldn’t have been more incredible. She gave me time to try and compose myself, she gave me a hug. I kept asking, “What did you see? What does this mean for baby?” Although she couldn’t go into details until a fetal cardiologist had taken a look, she gave us an indication that there was something ‘wrong with the plumbing’.
We were desperate for answers. The amazing sonographer knew we wanted to see a consultant as soon as humanly possible, so she picked up the phone straight away and got us an emergency appointment the very next morning.
We hadn’t wanted to find out the sex of the baby, but after finding out there was a heart defect, I turned to the sonographer and asked her. I now wanted to know. She said, “He’s a beautiful little boy.”
We left that scan room broken and in shock. We felt like the world had literally fallen from our feet; our hearts were shattered into a million pieces. That night we went round to my parents, it was a beautiful sunny summer evening. We ordered a takeaway and all sat in the garden in silence trying to grapple with the news.
In a twist of good fate, one of my husband’s clients is a fetal medical specialist, practicing in another country. We called him straight away, and he reassured us that things could be ok – we just needed to wait for the official fetal cardiologist scan the next morning.
Of course, we had no sleep that night, waiting for the hours to tick by for that all important appointment the next morning.
Friday morning arrived and we walked into the fetal medical unit. We were met by a wonderful consultant. She performed the detailed scan on our little boy’s heart and it felt like it took hours. Measuring each tiny ventricle, each tiny valve. Watching his heart beat so beautifully on the screen in silence, in the back of my head I was thinking, how could anything be wrong? He was kicking away, he ‘looked’ healthy and strong.
That hour was the longest hour of our lives; we held our breath the whole time. I felt physically sick.
The consultant then replaced her doppler and turned to us in a serious manner. “Your baby has a serious heart defect, but it’s operable with good results,” she said.
I let out another cry, grabbed the consultant’s hands and kept repeating her words like a parrot: “Operable, good results, operable, good results.” We had a chink of hope…
Then came the two hour consultation afterwards, where a fetal cardiac nurse specialist joined us with our consultant. She drew a ‘normal’ baby’s heart. (It was at that point I wished I’d paid more attention at biology in school, but it all came flooding back!) Then she drew our son’s heart. The two main arteries were plumbed in the wrong way round. We immediately understood what was wrong.
Our baby had TGA (Transposition of the Great Arteries) and a potential VSD (hole in the heart).
We spent what felt like years in that room, sitting there and listening, trying to absorb all the information we were given. It was hard, as the shock had almost made me go into a trance, and I couldn’t really process everything we were being told. We asked if we wanted an amniocentesis to determine whether there were any potential chromosomal defects with baby. It’s a very personal decision, but we declined. This was a very much loved baby and we knew we would just deal with everything as and when it came.
So we had a diagnosis, and we had a fantastic team of consultants looking after us. But we needed help mentally, we needed support, we needed to find other heart mums and dads to lean on. This was where Tiny Tickers came in. A charity that honestly saved us.
I connected straight away with them, and booked on to the next set of antenatal support group sessions, facilitated by a heart mum. When the zoom sessions started, we all introduced ourselves. At that moment, I felt a huge affinity with everyone on the call – a connection so deep that it bonded us all through the pain of discovering our babies had CHD (congenital heart disease).
The sessions were beautifully run – so well structured, so well organised – no question was too silly. It was a real safe space to talk openly about our concerns. These sessions became the highlight of our week, although the topics and conversations were hard and difficult at times, they were immensely reassuring.
We bonded with other parents and learned all about what it was like to have CHD, go through treatment and surgery and ‘what to expect’. Everything, from what to pack in a hospital suitcase (not a bag, in many of our cases!), to being a parent of a heart baby.
We leaned on these sessions so much. The facilitator spoke with such passion, compassion and empathy – she made us all feel so heard and was incredibly supportive. I’ll never ever know how to thank her for everything she did for the both of us.
Tiny Tickers sent out a fantastic information pack, which included two bonding squares. They made my heart swell. To think there were amazing people out there knitting these squares for heart parents to swap scents while their babies were in intensive care was so heart warming.
It was only after speaking with other heart parents, that I realised how phenomenally “lucky” we were that our baby boy’s heart defect was even spotted at 20 weeks. I know Tiny Tickers do so much in terms of training sonographers to detect heart defects, because early diagnosis really does save lives. Again this became even more relevant when our son was born….
Skip forward to the last few months of the pregnancy and we were being scanned every week. The consultants were concerned that the baby’s VSD wasn’t actually there, and the septum that allowed de-oxygenated blood and oxygenated blood to pass through the heart was closing already in utero.
We were told that our baby would more than likely need a balloon septostomy immediately after birth to give him a chance of stabilising before the big switch operation. The teams had meeting after meeting about our case, due to the severity of the condition. We felt like we were in very very good hands.
The day of his birth arrived, at 38+5 weeks. We gave birth in a cardiac theatre, with another theatre next door all ready for our baby to have his first life-saving operation. There were over 30 NHS specialists at our birth, something we were later told is a once in a four year phenomenon.
It makes me so emotional to think of everyone we met that day, it was the finest example of our precious NHS working at its best. The teams of doctors, surgeons, consultants, nurses, midwifes who performed miracles that morning are utter heroes in our eyes.
We named our little heart warrior Sebastian. He survived his balloon septostomy and was recovering well on intensive care. I was able to go and visit him that evening, which was so special, although it was an incredibly hard environment and so heart-breaking to see wires and tubes coming out of every part of his body. We both felt so so prepared mentally as to what to expect. Again, we attribute that solely to the incredible sessions hosted by Tiny Tickers. Everything they had prepared us for helped us so much mentally.
The days passed, Sebbie’s breathing apparatus diminished and we could hold, feed and bond with him. The wires were troublesome, and made changing nappies like an Olympic sport, but we slowly got used to life in intensive care.
Then the day of his big open heart surgery came. It was one of the toughest days of our lives. The surgeon was brilliant, reassuring and collected. The night before, he said, “I’ll do my best.” That was all he and his team could do.
Taking Sebbie down to the anaesthetic room was tough, but the team was so supportive. His switch operation took all day. We heeded the advice from the Tiny Tickers support groups and went for a walk. We went to St Paul’s Cathedral, lit a candle, said a prayer and then walked back in the sunshine to a restaurant (not that either of us felt like eating!) At the end of the meal, the waitress asked, “Have you got anything nice planned for the rest of the day?” We replied, “Well our son is having open heart surgery right now, sooo…” She was so moved that she gifted us the meal. Small acts of kindness like that were so heart-warming.
We then got the call from the surgeon. All went as well as expected and they were pleased with the results. What a feeling! We knew we weren’t out of the woods yet, as the first 48 hours after surgery were critical. But he’d made it. He had gotten through the biggest hurdle.
He aced the next few days. Off the ventilator, established feeding again, healed and grew stronger. We were bursting with pride. To survive two life-saving operations in the first two weeks of his life – we knew he was a fighter.
We bonded with the other families on the wards and made life-long friends, all willing each other’s babies to fight for their lives and eventually make it out of hospital.
And he did, just over three weeks after birth. We headed home – just in time for Christmas.
Sebbie’s journey has changed us beyond all recognition, and not necessarily for the worse. We have a deeper level of resilience than we ever knew we had, a stronger bond with him and all the amazing heart parents we met. An amazing community to lean on throughout the years ahead, and a purpose to hopefully raise as much as we can for Tiny Tickers to keep doing the incredible work that they do.
I know I said it before, but we would have been lost without Tiny Tickers’ support. This is a charity that really changes people’s lives and one which we are so grateful to have found in the darkest of times.
As for Sebbie, he’s just amazing and awe inspiring. Growing stronger every day, smiling and chatting as if nothing ever happened. He has a fantastic cardiac consultant keeping a close eye on him as he grows with his new heart.
There isn’t a day that we don’t look at him and feel so lucky to be his parents.
Tiny Tickers is here for heart parents, always. Order a support pack, join a virtual support group and find out more about our support services here.
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