It’s been three years since we discovered Emily had a congenital heart defect. After years of trying and then the delight of discovering we were having twins, our twelve week scan brought us crashing down. If the infertility hadn’t already robbed most of the joy of pregnancy, the remaining scraps evaporated when our sonographer went very quiet and then left the room.
Shortly after we were taken into a little room with sofas and tissues and bland artwork. We knew bad news was coming but just had to hope it wasn’t too bad. I guess the medical professionals are stuck between a rock and a hard place. They need to give you all the information but from a scan can’t actually tell you all that much. For us, we were given a worst case scenario but told it might not happen.
Twin two, now known as Emily, was small and showed other signs of tetralogy of fallot. A condition where there are four separate heart defects which results in low oxygenation of blood due to the mixing of oxygenated and deoxygenated blood. This was the best possible outcome. Surgery would be essential. We were also told these defects could indicate various chromosomal abnormalities, some of which are fatal soon after birth.
Leaving that consultation was devastating. The cruel twist was that we likely wouldn’t know much more until after they were born unless we were prepared to investigate and risk miscarriage. For us, this wasn’t an option. However hard the wait would be, I couldn’t justify the test just to prepare myself. We waited.
Add a heart condition to a high risk twin pregnancy and you get watched a lot. I don’t think I went more than a fortnight without an appointment and this increased to weekly by the end of my second trimester. She grew but slower than twin one and still we didn’t know much. I daren’t get too excited. Baby purchases were kept to a minimum. The thought of buying a cot that might not get used was too much so we just didn’t.
The combination of breech and transverse twins and this extra complication led my consultant to recommend a planned c-section. I was disappointed but really I was also grateful the decision was pretty much taken out of my hands. We were prepared that she may be born blue and the theatre was full of so many amazing specialists.
On the day, I was strangely calm. We had to wait until there were two PICU beds available, just in case. Finally it was time. Twin one was born and placed close to me but twin two wasn’t. I’m not sure for how long but I knew Stu was right there with her. He kept coming back to reassure me and he got to hold her first. This picture is one of my favourites.
After I was sewn up, we were wheeled to recovery and I was able to hold my second tiny girl. At 4lb 4oz she felt so incredibly tiny but looked pink and perfect. We were allowed to take the girls home after two days. All seemed well but would need confirming with a scan at another hospital on the way.
It was deemed that she was healthy enough to go home but that she’d need monitoring as she could go blue. We had monthly check ups and were told to avoid socialising to minimise the risk of her getting an infection. The plan was that by six month she should be strong enough and big enough to face the surgery to correct the defects.
Sure enough she was and we were lucky not to have any blue episodes. By the time the surgery came around, the consensus from various consultants was that in fact she just simply had a hole in the heart. For us, this was by far the best diagnosis we could have hoped for and a million miles better than what we’d been prepared for.
Watching our tiny one be put under with a mask is not something I think I’ll ever forget but I had so much faith in the team. The hours crept by and early in the evening we were told we could see her. The tubes, wires, beeping and monitors were distressing but under it all was our Emily smiling up at us. The care she received was exceptional and what I’d imagine if you were in a private hospital. Each bed had a specialist nurse sat at the end watching and monitoring the patient 24hrs a day.
Knowing our baby was in such good hands, helped me so much. Amazingly, we were given a room where we could stay for the entirety of Emily’s stay. There was a kitchen and lounge room. Having these facilities made the incredibly difficult time that little easier. Being able to have our family together was priceless and I’ll be forever grateful to the Heartlink charity that made this possible.
The operation was a complete success and Emily made an amazing recovery. Looking at her now, you’d never guess she is a heart warrior unless you caught a glimpse of her scar. I don’t even consider covering it. Recently, she has started to notice this special mark but then quickly forgets about it again. I hope she’s never embarrassed by it and is proud of the battle she fought.
She’ll always have her heart condition but there should be no long lasting affects. Her annual checks are now a chance to see all the lovely staff who cared for her in those first few weeks and months. They met my girls at two days old and now they’re toddlers. It makes me so sad that there are plans to close such an amazing place. How incredibly lucky we’ve been to benefit from such first rate care. Our NHS experience was amazing.
What are you grateful to the NHS for?
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32 thoughts on “A Heart Warrior Success Story”
What a brave, brave girl and a super supportive family. Sending you all lots of love xx Thanks so much for sharin with #Blogstravaganza xx
She’s amazing and so resilient. Thanks
What a brave girl and family, and a lovely honest post. Thank you for sharing with #Blogstravaganza
Finally felt the time to write our story
That’s so sad they might be closing it, it sounds like they made a terrible situation so much better for you. And you’re right I’d have never guessed she’d been so ill!
There is a huge campaign to stop the closure but I guess we’ll just have to wait and see.
Fantastic story, and she looks so well! x
Such a smiley one – you’d never know
I really hope so
Stories like yours are proof of the amazing work the NHS do! What a brave little girl! #triumphanttales
Such fantastic care – we are incredibly lucky. If she’d been born elsewhere who knows what future she’d have faced.
Until this post I was not familiar with NHS. Your story brought tears to my heart. I am so grateful for your outcome.
Our national health service is amazing and I’m so lucky to have benefitted from it. If she’d been born elsewhere who know what her put one would have been.
I am so pleased to hear this. I’m a midwife who has spent a fair share of time working in the feral medicine unit, so many times have I sat with parents whilst they are given news of a condition their unborn baby has. So many times we have given news of a condition but been unable to say exact what the outcome will be. So so pleased your little heart warrior is doing well x
Definitely a #triumphanttales
**fetal not feral!!!
lol I did wonder
It felt like slow motion being told she might not make it. I can’t believe how lucky we’ve been.
Oh it must have been such a worrying pregnancy with all of that news coming in! Thank God everything worked out in the end. Emily is such a brave little girl! Thank you for joining us at #BloggerClubUK
It’s all a bit if a blur but at the same time certain point are engrave permenantly in my mind. It’s a shame I couldn’t enjoy pregnancy more but I know how lucky I am.
What a wonderful story, I am so very glad you received such wonderful care and that your little girl is doing so well now. She is indeed a warrior. #PostsFromTheHeart
Made us realise how valuable the nhs is. We feel very lucky.
I love a happy ending! I completely understand your post. Having been told at 20 weeks Ben was thought to have Down Syndrome and I was high risk anyway. So we had that quiet room with tissues chat. Although it was discovered he didnt have it, due to a long labour he ended up in NICU for a week and Hubby run off with him and the doctors, so again, I know everything you felt.
I don’t think I’ve recovered from the trauma of the labour and the week following, but I am so thankful that Ben and your girls are healthy, all thanks to the NHS!
Thank you so much for sharing this with us at #TriumphantTales. I hope to see you back tomorrow!
It’s terrifying when you get that sort of news but great to know we were in good hands.
I never realised you were so local to us! Glenfield hospital and Heartlink saved my friend’s daughters life – so something very close to m heart! Your daughter is doing amazing now and that’s such a testament to their work! #HumpDayLinky!
I’m a Leicester mummy – where are you? Glenfield is absolutely amazing.
So glad to hear that your daughter is doing so well now. My eldest daughter has hypoplastic left heart syndrome and we’re currently waiting for a date for her next heart surgery. She is very proud of her zipper scar and her “special heart” and it’s always amazing to see how much she takes all the appointments and hospital visits in her stride. I hope that your daughter will continue to do well x #bloggerclubuk
That’s great to hear.i hope my girl is as proud. All the best for your daughter too. X
This made me very emotional to read. What a lot you went through but so wonderful to have a happy ending with your two beautiful girls. Xx
I finally had some time to read some of your wonderful stories. What little superstars your girls are. Xx
Thanks Sarah, they always will be to me.