Tommy’s story

Natasha gave birth to her second child, Tommy, in January 2015. Tragically his heart defect was undetected and he passed away at 11 days old. Here Natasha tells his story.

Tommy’s story starts in the same way as many others – in May 2014, we found out we were expecting a baby. It was such a happy and exciting time, tinged with the natural worries of any expectant parent.

The first trimester passed and my 12-week scan went smoothly. We had a due date – 24th January 2015.

As excitement levels rose, we decided to pay for an extra scan at 16 weeks. You aren’t supposed to say this, but we both secretly wanted a baby boy and our wish came true. We couldn’t believe it.

But it was at our 20-week scan that we first heard the words ‘Congenital Heart Disease’. Our sonographer spotted a two-vessel (rather than the normal 3-vessel) umbilical cord. Although rare, we were told that it could be a sign of heart problems in the baby so we would need a further scan at 32 weeks and extra paediatric checks at birth.

It seems bizarre now but we weren’t that concerned at the time. The health professionals had seemed so relaxed and, given how rare the condition was, we hoped that it was just a precaution.

The 32-week scan was conducted by a different sonographer. She didn’t know the details of our case and was confused about why we had been referred for a follow-up scan. She reiterated that it was very rare to see a 2-vessel cord, and even more for that to be a sign of heart problems. After scanning and not detecting any anomalies, she cancelled our post-natal paediatric checks and told us that our baby would have standard newborn checks, followed by a check from either the paediatrician or our GP if they were unavailable.

Even at this stage, we weren’t worried. The health professionals around us didn’t seem concerned, so why should we?

Christmas came and went, and then it was January. On the 22nd, my waters broke at home and our baby boy, Tommy, was delivered within minutes of arriving at the hospital.  He was beautiful and perfect, but his hands and feet were extremely cold. To raise his temperature, he lay on me for hours, but he didn’t receive any checks at the hospital that day and by 9.30pm, we were discharged from hospital with no concerns. Tommy would have his newborn checks with our local GP the next day.

2015-02-02 15.42.23The first night at home was extremely quiet. Tommy didn’t seem interested in feeds and slept unless I woke him. The only time he really reacted was when you changed his nappy and he would cry. His colour had also started to change, from white/green to purple. The midwives had noticed the colour change at the hospital but had diagnosed it as facial congestion.

The next day at his newborn checks, I mentioned Tommy’s colour, his disinterest in feeding and that he seemed to be slightly short of breath on occasion. Our GP reassured us that it was all normal and to try not to worry. His temperature was still very low, but the doctor explained that this could be a result of circulation changes after birth, that it would get better and that we should keep him wrapped up.

We’d had answers to all our questions but we still felt uneasy. Were we just being overanxious parents or did we have any real cause for concern?

As the days past, I became more and more worried about Tommy’s indifference to feeding and his lack of bowel movements. I decided to express my breastmilk so that I could measure exactly how much he was eating. It took 6 hours for him to drink just 1 ounce of milk.

Again when we saw IMG_1454midwives they didn’t seem alarmed.

On top of this, Tommy’s colour continued to change – from purple to grey – and his lips seemed to get worse and worse. They were dark blue when he cried (which wasn’t often – only when we changed his nappy or bathed him).

We were told that it was facial congestion and that his colour would soon return to normal.

Every health professional we had met had given us answers to explain away his colour, his sleepiness, his lack of interest in feeding, his temperature and his shortness of breath. We knew instinctively that something wasn’t right but what could we do? Where do you turn when numerous medical experts tell you there is no cause for concern?

We were due to see a midwife we knew and trusted on the 3rd February and were confident that she would take our concerns seriously. But on the evening of the 2nd February 2015, Tommy started to cry and wouldn’t settle. We tried everything to soothe him but nothing was working. As we got into bed that evening, Tommy appeared to calm, his crying stopped but, as I looked down at him, he didn’t look like he was breathing. I gently nudged him, but there was no reaction. His colour seemed to change – getting lighter and losing that purple/grey tinge. He was floppy and unresponsive. We called 999.

From there, our story becomes heart breaking and I will simply say that Tommy was unable to be saved. I can never explain to someone the pain of losing your baby. It’s a pain nobody wants to imagine or ever feel.

IMG_2229The results of Tommy’s post-mortem showed that he had a form of Transposition of the Large Ductus Arteriosus, a congenital heart defect that can be corrected with surgery. Surgery that has a 98-99% success rate if only his heart condition had been detected.

The work of Tiny Tickers and other children’s hearts charities is desperately important. Congenital heart disease is the most common and fatal defect in babies, affecting 1 in 125 babies.  Tiny Tickers’ Think HEART campaign shows 5 signs that your baby could have a heart condition. With Tommy we could clearly see four of them – the fifth is heart rate which we didn’t know. The signs were there and if we had only known about Think HEART before, we would have shown this to one of the many medical professionals who checked Tommy and they may have been more open to our concerns.

Tiny Tickers is providing training to sonographers across the UK so that they are more confident and equipped to detect heart problems during pregnancy scans. Early detection during pregnancy is the ideal scenario but, as an extra safety net, our local hospital is now using Pulse Oximetry testing as part of newborn checks and their staff are being taught about the Think HEART campaign.

This has been a very difficult story for me to write. Until now, I have kept the death of my son private but I am hoping that, by sharing Tommy’s story, it will help parents identify the warning signs themselves. In memory of him, I will do all I can to prevent other parents experiencing the needless loss that we have endured. And hopefully, through that, I will make my son proud and Tommy’s legacy will live on.

Just as a final word, we would like to thank all our family and friends who have been a massive support to us over the past year and with whom we couldn’t have achieved all we have. Thank you all xxx