How it Feels: Congenital Heart Disease

June 7th – 15th is British Heart Week. Mother Sider Helen is one of three mums we know whose baby was born with  Congenital Heart Disease (CHD), a condition affecting one baby born every two minutes in the UK. Currently, only 50% of these cases are detected during pregnancy, meaning many families have no time to prepare themselves for having a poorly baby. We are in awe of the babies we know who have demonstrated the most incredible tenacity in those precious days, weeks, months and years after birth, not to mention their parents’ determination and courage in what are, undoubtedly, incredibly tough times.

Here, Helen gives a candid glimpse into her world in the wake of discovering that her second daughter, Ottilie, was suffering with CHD less than two weeks after her birth…

‘It was 1pm. The sun shone in through the vertical blinds, reminding us that there was a beautiful mid-August day outside. I focused on the shard of light reflecting on the top of the water in the birthing pool, my doula was supporting my reclined weight and after one quiet final pregnant pause, my crouched husband caught our second daughter. My perfect rainbow baby, her body still curled and her skin wrinkled and covered thick with vernix.

After a difficult pregnancy battling Intrahepatic cholestasis of pregnancy (ICP) and the anxious reality that we could lose her with no warning, I still struggle to put into meaningful words the relief I felt as she blinked at me calmly for those first few moments. My hypnobirthing techniques had helped me stay calm and focused throughout the final worrying few weeks, and the nerve-wracking first few hours after she was born. Ottilie had breathing difficulties and low blood sugar (both of which we’d anticipated and been fully prepared for) and we had our first proper cuddle under the bright lights of the NICU at Stoke Mandeville later that afternoon. I thought we were on the home run and, as each day passed, I felt a sense of relief start to wash over me.

Day 12 and after two days at home we were readmitted for even more jaundice treatment under the lamps. Reassured by the midwives and nurses that it was simply ‘breastmilk jaundice’ and that the overall picture was an improving one, we hadn’t thought too much of it all; I felt relieved that I’d not properly unpacked the car. And with a two year old at home I should take the opportunity to relax with a movie or two while somebody enjoyed her sunbeds.

Later that evening the consultant came to spend some time with us while he gave Ottilie a full check over. His pause while he listened to her chest was marked, the sudden silence in the room heavy with anticipation while we waited for him to carry on the lighthearted conversation… except it never came. He removed his stethoscope and stood watching her for what seemed like an eternity, then he walked around to our side of her bed and quietly, calmly, asked us both to take a seat. He removed his glasses and slowly rubbed his jaw, I could see he was trying to find the words for something awful. My heart beat so hard in my chest I think the nurse by the door could feel it, and I struggled to catch my breath, suffocated by the panic. Something was seriously wrong with my baby.

Those moments took an eternity to pass, the consultant ushered my husband to sit closer to me and take my hand, and slowly he knelt down on the floor close in front of us, Ottilie lit blue under her lamps out of the corner of my eye.

“Do you know what a heart murmur is?”

The next couple of days were a blur of information, echocardiograms, new consultants and left me void of what little postpartum elation I had been left with after her tricky start. Days run into nights in hospital and I didn’t realise it at the time, but I was mourning those first precious newborn weeks. Those treasured first experiences as a family of four I’d visualised for such a long time just weren’t realised. Time was spent dealing with the reality of daily logistics as my husband returned to work and we tried to keep our sensitive toddler’s life as normal as possible. Nobody wanted her to realise that her new baby sister was struggling. The mechanics of having a poorly new baby were exhausting, and that was before we’d even given ourselves time to emotionally process the reality of her condition. I felt guilty about my sadness, that perhaps I should just be grateful she was still here, and be strong for her.

Our first few months were filled with bad news. Abnormal breathing, low blood sugar, prolonged jaundice, slow weight gain (and eventually weight loss), difficulties feeding and unusually sleepy, periods of cyanosis (turning ‘blue’) during feeds or when waking from a nap, undiagnosed posterior tongue tie (revised at 5 months) and tongue asymmetry… those early months were a complete blur and I still feel robbed of the experience I had hoped to have as a new Mum to two.

After a referral to the John Radcliffe Children’s Hospital and the wonderful Dr Adwani, Ottilie was finally diagnosed as having three holes in her heart. Two VSDs (Ventricular Septal Defect), and one ASD (Atrial Septal Defect). The position and size of each hole, and whether it permeated muscle or membrane makes the impact and prognosis different for each. To give it a label, Congenital Heart Disease was the reason for her tricky start, and we are forever grateful for our lovely paediatrian at Stoke Mandeville who took the time to examine her so thoroughly when she was being treated for jaundice.

Beautiful Ottilie

Nobody can prepare you for hearing bad news about your child’s health, but I think that the shock of hearing it in the first few days after birth meant I swung between all consuming raw panic, and feeling entirely numb. Some days I could take no pleasure from the little joys and I cried all the time. I’d wrongly assumed that heart defects were one of the things that sonographers were trained to spot, and I felt angry that nobody had found the problems earlier. In the U.K. Only 50% of Congenital Heart Defects are picked up before birth. In truth, it wouldn’t have changed our journey, but somehow I’d felt let down by everybody.

Although it’s frightening, Congenital Heart Disease is a relatively common birth defect, and in the UK one baby is    born with CHD every two hours. Luckily the U.K. has some of the best success rates of infant heart surgery in the world, and 85% of infants born with CHD will survive into adulthood. Ottilie is now 10 months old and her development is starting to get back on track. Hopefully we will have a period of respite now to be ‘normal’ before she is old enough to have her surgery.’

My Top Tips for other parents faced with CHD:

1. Have faith in your medical team, and if you don’t, seek out professionals who are speaking your language. Your child’ health is beyond priceless; it’s important that you feel every avenue is explored and your every concern is given their utmost attention. If you don’t feel like you’ve had full explanations where you’ve needed them or your worries aren’t being addressed, don’t wait around feeling ignored – get a second opinion if you need one. You know your child better than anybody else and if you think something isn’t right, your concerns should be heard.

2. Become an expert. Ask your paediatrician and your cardiologist for research papers, articles and extra reading. It’s completely understandable to feel fearful of a condition that you don’t fully understand, the more you arm yourself with knowledge and familiarise yourself with the langauge, the less powerless you’ll feel.

3. Be present. When times are really worrying, try to remember to take joy from the everyday little moments that can so often pass us by – especially when we’re feeling stressed. A quiet family cuddle on your favourite chair, the smell of their baby hair or those few moments when they hold your finger tight. It’s so easy to get wrapped up in the worry of having a poorly baby, and miss those precious moments.

4. If you ever start to feel like you’re ‘not ok’ – that’s ok! Tell somebody (I told my Mum, but you could tell your health visitor or your GP if you don’t want to tell your family) who can support you. When you’re having a really tough day, just ‘showing up’ for it can make you feel better. These simple steps always help me: Make your beds, take a shower, eat some fresh fruit and get outside for a long walk. You’ll feel brighter, sleep better and have a more positive outlook.

5. Change the subject! If somebody had given me this ‘top tip’ in the first few months after my daughter was born, I’d probably have felt really angry, but 9 months in I can see its value. It’s so easy (not helped by all those new baby hormones!) to feel overwhelmed and isolated after hearing the news that your new perfect baby, isn’t quite as perfect as you’d thought. Try not to let it overshadow all the other important relationships in your life, especially if you have other children who are old enough to pick up on the gravity of the situation.

Some excellent sources of online support:
– Please do not hesitate to contact me if you need to speak directly to another parent. Either comment on the post (below), email Tales from the Mother Side on FB and they will pass the message on, or message me directly on Instagram @UndertheCedarTree.
The British Heart Foundation (BHF)
Congenital Heart Defects UK
The Children’s Heart Foundation
Tiny Tickers

Helen, writing for The Mother Side xx

Do you have personal experience of CHD? Where did you find the best advice and support?
Share your stories with us below.

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5 thoughts on “How it Feels: Congenital Heart Disease

  1. Our daughter had her life saving surgery 8 years ago today. We weren’t prepared at all and had a very similar paediatric check at 2 days old, she was our 2nd baby and we had an almost 2 year old at home. This check also found a murmur which turned out to be Transposition of the Great Arteries. Due to the condition surgery is undertaken as soon as possible and in our case an Atrial septostomy at 4 days old at JR and corrective open heart surgery at 14 days old at GOSH. We were very fortunate to have fantastic support from both John Radcliffe and Great Ormond Street throughout and Dr Adwani is who we see annually too.

    The whole experience seems very surreal now, I operated on autopilot and felt it must be my fault she was ill, that my body hadn’t done the job properly.

    The best piece of advice I was given was to keep a record of the important milestones. I didn’t feel ready to write in detail but kept a note of the little things, my daughter has her life saving scar but with no knowledge of why and it has helped to talk to her about it as she has grown up.

    Wishing you the best of luck with Ottilie’s continued progress and future surgery x

    Liked by 1 person

    1. Thank you Vicky ❤ We'll make sure Helen sees your comment and this great advice about keeping a record of the little things – what a lovely way to help your daughter understand all that she, and you, went through and survived! 🙂 x

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  2. Read this well written account of your harrowing experience whilst occasionally casting a reassuring glance at my three year old who we almost lost as a baby due to CHD. It brought up a whole range of feelings from the memories of the mind numbing fear to waves of huge greatfulness that he is still here with us healthy and happy!
    I’m currently writing a book and a blog about our experience and it’s been very emotional but also therapeutic to relive it all and I am finding out just how many parents have gone through similar scenarios with their babies.
    Please give Ottilie a big hug from me, brave wee thing! XXX

    Liked by 1 person

    1. Wow! Please let us know when you’ve finished the book – we’d be more than happy to help you spread the word once it is published. I’ve just had a look at your blog; what a beautiful boy you have! We have friends currently at Southampton General with their little girl – 10 weeks and about to have her third OHS. I will direct them to your page ❤ Jo x

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    2. So pleased to hear the positive news about your son, I hope you found it useful to reflect on the early months, sometimes it’s hard to remember what they went through isn’t it? So easy to forget when they’re looking healthy and well. Best of luck with your book – sounds like an exciting venture! Helen x

      Liked by 1 person

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