Baby Loss Awareness Week took place from the 9-15 October. On Thursday 15 October at 7pm, thousands of people across the globe lit candles in memory of the babies they have lost.
15 October is recognised worldwide as Pregnancy and Infant Loss Remembrance Day. My husband and I added our candle to the global wave of light, remembering our baby girl, Grace, who we lost to a congenital heart defect.
Baby Loss Awareness week was about commemorating those who were taken too soon. I'd now like to talk about the steps we can take to prevent some of those deaths. Specifically, how we can prevent deaths caused by one of the most common birth defects - congenital heart defects (CHD).
Heart defects affect one out of every 125 babies, making them the most common cause of birth defect related deaths in the UK. Shockingly, only one in three babies affected by CHD have their condition detected during pregnancy.
Early detection of CHD saves lives. That's an undeniable fact. However, at present, the two out of three babies whose heart defects are not detected during pregnancy have to take their chances.
I am very proud to volunteer for a wonderful charity called Tiny Tickers, which aims to improve the detection of CHD during pregnancy and give heart babies a better start in life. Tiny Tickers' mission is entirely achievable and their methods work.
At present, Tiny Tickers are training sonographers to be better equipped to spot heart defects at the 20 week scan. Statistics show that the training works - in the regions where it has already been carried out there are significantly higher detection rates of CHD. Tiny Tickers is a small charity with huge ambitions - to train sonographers all over the UK so that every baby with CHD has the best start in life. But they are not quite there - yet.
With this in mind, there are two very important steps you can take to ensure that, if your baby does have CHD, it is detected and treated as soon as possible:
Give Your 20 Week Scan the Big Tick
Tiny Tickers have created a Big Tick card, which you can take along with you to your 20 week scan. It contains questions you can ask your sonographer to enable you to confidently discuss your baby's heart health together. The Big Tick Card is completely free and can be ordered from visiting the Big Tick website. It only takes a few seconds to order and doing so means that you will be well prepared with the questions you need to ask about how your baby's heart is developing.
In the vast majority of cases, babies' hearts are perfectly healthy. But if there is a problem, spotting it at the 20 week scan will give him or her the support and medical care they need straight away. This means a better chance of survival.
During my time as a volunteer with Tiny Tickers, I have heard many stories from new parents whose instinct told them that something was seriously wrong with their baby but who were dismissed by health professionals. For example, Grace Brown had voiced her concerns over daughter Honey's health many times before her heart problem was finally picked up. By the time Honey arrived at hospital she had already gone into heart failure. Luckily, her story has a happy ending.
Part of Tiny Tickers' work includes spreading a very important awareness message called 'Think HEART'. If a baby is not thriving and does not seem to have an infection, jaundice or any other common cause, parents should ask a health professional to check the following 5 signs of a heart problem:
Heart rate: Too fast or slow? (normally 100 to 160 beats per minute)
Energy & feeding: Sleepy, quiet, floppy, too tired to feed or falling asleep during feeds?
Appearance: A pale, waxy, dusky, blue, purple, mottled or grey colour may mean that not enough oxygenated, red blood is getting to the body (normal oxygen saturations are 95-100%)
Respiration: Breathing too fast or slow? (normally 40-60 breaths per minute)
Temperature: Cold to touch - particularly hands and feet?
By remembering to 'Think HEART', parents can be aware of the signs of heart problems in their babies.
My daughter, Grace, had a heart defect called Ebstein's Anomaly, which was detected at my 20 week scan. In most cases, early detection of CHD gives babies a better chance of survival.
Unfortunately Grace's heart defect was so serious that, even with the most expert medical care, she didn't make it. But, early detection meant that she received the best treatment available. At least when I look back now, I know that everything possible was done for her. Without the eagle-eye of the sonographer at my 20 week scan, it is highly likely that we would never have met Grace alive. She would almost certainly have been stillborn if my pregnancy had continued unassisted. Instead, we had a precious few hours with her before she passed away. Those memories mean the world to us.
One in three babies with CHD are discharged from hospital with no one knowing about their life-threatening condition. This is a frightening statistic. Please remember these two positive actions you can take to be aware of your baby's heart health and give his or her heart the best start in life.