Blogging is a funny thing. In the five plus years since I first pressed publish, I’ve built up a community of not just contacts but friends, sharing life-changing events like getting engaged and married, writing a cookbook and getting pregnant. It’s a deeply personal place, yet simultaneously accessible to any stranger, which is why I had to think hard about how much of Nino’s story to share in this space. But after some deliberation I realised that it’s too important not to tell; for me as a journal and catharsis of sorts, for Nino when he’s older to see how far he’s come, for loved ones to understand what we’ve been through, and even for those strangers to raise awareness of the rare congenital heart conditions that can happen in any pregnancy.
Our baby boy was diagnosed with Transposition of the Great Arteries and a small VSD at our routine 20 week antenatal scan. The two main blood vessels leaving his heart had developed the wrong way round (something that occurs at around 7 weeks gestation, doctors don’t know why this happens but it’s random rather than inherited), meaning blood flowing to the lungs to pick up oxygen flowed back into his heart rather than round his body and blood flowing round his body was unable to reach his lungs to pick up oxygen. All well and good while he was snuggled in my womb with the placenta providing oxygen, but we were told that as soon as he was born, Nino would need an arterial switch operation in order to survive.
Having prepared ourselves for immediate surgery, it was both exciting and terrifying to discover we could take him home for a few weeks first. Nino’s additional small VSD, or hole, allowed enough oxygen to fuel his tiny newborn body for those few early weeks and the doctors wanted to give us the chance to get him bigger and stronger because of an additional complication: an intramural coronary artery growing into the aorta which would have to be moved as part of the switch procedure. I won’t go into too much detail, but for perspective on how intricate this surgery would be, imagine extracting a thread of hair woven into a strand of spaghetti. Incredible, scary and sobering stuff.
On Tuesday 12th April we were admitted to the children’s ward of Royal Brompton Hospital prior to Nino’s surgery on 13th. We snuggled all night, Nino blissfully unaware of what was about to happen, me keen to top our greedy boy up with enough milk to keep him happy before his nil by mouth curfew of 4am. At 6am we bathed him in the bright red antibacterial wash required pre-surgery then dressed him in a hospital gown so tiny it made me want to weep. After meeting the anaesthetist and signing some hideous consent forms, we headed down to theatre. We were greeted by huge rooms, bright lights and what felt like hundreds of doctors in scrubs and masks before being admitted into the ante-chamber where Nino would be put to sleep. Minutes later we kissed our baby boy goodbye and handed him over to the Brompton team.
Ten hours later they called us back. I can’t quite describe how those ten hours passed, what we talked about and where we went; suffice to say they were long and helpless and hard. When Nino returned to intensive care his chest was still open to allow for post-operative swelling, cannulas in his neck and thigh, dozens of different drugs flowing into his body and drains flowing out to remove the excess fluid. Horrifying as it is to see your baby surrounded by so much equipment, knowing it is all there to keep him alive helped us come to terms with it hugely. The nurses had cut a heart-shaped hole in the gauze over Nino’s open chest, beneath which we could see in to his re-plumbed heart, and rather than feeling squeamish, I couldn’t take my eyes away – there was something simply breathtaking about being able to see the pure physical force of our little boy’s brave beating heart.
We spent ten days in total in the hospital, a week in intensive care and a couple of days on the children’s ward re-establishing feeding and some sense of normality (as much as that’s possible in a room with five other screaming newborns attached to monitors). When we weren’t glued to his bedside, Luke and I slept in accommodation a few minutes walk from the hospital while our mums ferried in clean clothes and home cooked meals. The team had told us to expect to be in hospital for around three weeks, so the speed of Nino’s recovery surprised us all. Less than twenty four hours after surgery, chest open and multiple drugs (including morphine) still coursing through his body, our brilliant boy was trying to wake himself up and root for food, that hungry survival instinct and lust for life evident in every wriggle.
I want to take a moment to sing the praises of the NHS. For all its minor flaws, the way care is pulled together round something serious like Nino’s heart condition has been second to none. This is a system who spotted the irregularity in his heart when it was smaller than my thumbnail, who assigned us a specialist cardiac nurse from that moment onwards and who sent us for prenatal scans with one of the consultants who delivered the Royal baby (!). It’s the system who helped me through labour with a specialist team on hand to transfer Nino between hospitals as soon as he was born. And the system which provided countless machines and drugs, as well as staffing the doctors, nurses and world-renowned surgeon who worked twenty four hours a day, for over a week, to save our little boy’s life. In another country, this level of care could have bankrupted us or worse. We really are exceptionally lucky.
So now Nino is home and slowly settling back into daily life. There are drugs to be administered which he doesn’t like the taste of, a wound to take care of and routines to re-establish. We’ve missed his immunisations so have those to catch up on and he’s not yet out of the woods in terms of knowing whether the switch has worked perfectly, or if he might need further surgery. Only future appointments, scans and time will tell, but considering his chest was cracked open and his heart rewired just three weeks ago, our little man is working nothing short of a miracle. As I write this he’s sprawled out on his activity mat, smiling, chatting and batting at a furry owl and kicking his legs with the strength of a boy who was born to be a brave, strong fighter.
Next week I’ll be back with a recipe, and then it won’t be long before we start thinking about introducing solids to Nino’s diet. I’d love any tips from foodie mums out there – how early did you start? Did you begin with purees and mush or wait for baby-led weaning? And once I’ve got the hang of things would you like to hear about my experiments here? There’s so much information out there I’m at a slight loss where to begin, but I do know it’s going to be a learning process, exciting and fun, difficult at times and very messy. A little bit like life, really.
i have tears rolling down my cheeks. your bravery in what you’ve all been through is mind blowing… & the courage you’ve shown to write & journal this time is tremendous. cuddle that dear boy very tight X
What an inspiration Nino is!! Here’s to a long, happy and healthy life to a beautiful baby boy and his family. Thank you for sharing your experience with us all
Wow, what a story, what an ordeal. You are all so brave! He is a gorgeous little boy, and is blessed to have you two as his parents. P.S. Love the family pic.
I’m glad you decided to share your story. It really does help in YOUR healing process, and if you ever feel like there is something you don’t want to share but you do want to talk about, you can reach out to me or other heart moms. I’ve found some great friends an community knowing that I am not the only one!
I felt the same as you during a lot of my son’s recovery, especially about the open chest! I was just so happy to SEE his heart working properly, I didn’t mind a little gore!
I’m so glad Nino is doing well and that his recovery has been speedy so far! It still truly amazes me that these little ones are so resilient and can bounce back so quickly! Good luck with all future check ups and keep us posted on his recovery!!
Keep on fighting little nino.. hes made of tough stuff just like his mummy and daddy. Love to you, luke and gorgeous boy nino xxxx
Amazing, your strength and his. Thank you for sharing your story in such a calm, easy-to-follow account. The photos are wonderful. I am sure this will be so helpful to anyone in a similar situation. Nino’s gorgeous and I can only wish all three of you the very best this world has to offer xxx
I had tears reading this. What a beautiful boy, so happy that he pulled through strong for you. What a fighter. Love to your family.
Gosh. What an inspirational and wonderful read. I had tears running down my face and a smile at the end. I hope your little family unit continues to thrive and I have no doubt that if he does need any further treatment, the love and strength the three of you have shown will carry you all through. Thank you for sharing so beautifully your very difficult experience and I hope all goes well and you can keep us up to date with his progress when you find time. jackie
ps he looks adorable xx
I’m crying at the thought of what you’ve all been through. As a mum I can’t begin to imagine this. It’s not just Nino who is strong…his mummy and daddy are pretty ‘nails’ too!!
Look at that littlest loaf! Oh the places he will go. Blowing him kisses from Maine.
I honestly teared up a little reading this, I am so happy he is a strong little fighter, and I can’t even imagine what those 10 hours were like.
As far as weaning, we went down the BLW route from 24 weeks (so 2 weeks shy of 6 months) and would totally recommend it. The Gill Rapely book is great as a starting point to get the basics.
I am not sure if you guys have any complications from his heart surgery in terms of earlier weaning, but we really found Zoe took to food fantastically waiting, and she slotted into our daily routine, ate what we ate and really enjoyed it! I have hastagged all of her eating photos on instagram with #zoejeats if you fancy having a peek back to when we started.
Roswen (roswensian) also did BLW with a slightly more cautious and reluctant child to get another perspective on it.
Best of luck, however you chose to do it, I am sure he will be a little foodie just like his Mum. 🙂 xxx
This made me cry Kate. Such in incredible story of love and strength – from all 3 of you, and your families too. I can’t even begin to imagine when you went through and the reserves of inner strength it required, but I’m so glad it’s all looking good now. Fingers still crossed for you! Lots of hugs xxx
Best wishes to you, your husband, and your little fighter. What a strong little boy, and let’s not forget to mention, extremely cute. Thanks for sharing.
This made me cry too! You’re so brave! So happy Nino came through it all
Oh what a touching story, so glad Nino is looking so sweet, amazing and happy! As do his parents. Thank goodness for modern medicine in these kinds of surgical miracles and lots and lots of love.
OMG! How strong are you all?! The guaze heart!!! Trying not to cry on the train. Big massive Luke bear sized hugs from the Bradleys for you all.
BLW – we started with purees as in America that’s all you really do, only now is it becoming popular to make your own baby food. But we have a brand called Gerber and they have a million and one options including organic here. In England you pretty much have Heinz and Ella’s. Loved Ella’s pouches but Layla had difficulty once we stepped up to purees with texture like bolognese.
Then I had a picnic in the park with an NCT friend and she was doing BLW and I watched her 6 month old son destroy a huge hunk of chicken, strip all the flesh from a juicy plum and leave the skin behind and lots of root veg cooked until soft – all leftover from their dinner the night before. It was messy but it was amazing. When she had first told me about BLW I wasn’t sold but seeing is believing!
I wrote a blog on the experience with a recipe. I emailed you the link.
All the love from the States! L. xx
wow – so glad to hear Nino is doing so well! you guys have been through so much but what a brave, strong little boy you have! of course you do – look how brave and strong you have been throughout all of this! I love reading your updates – and he looks absolutely perfect and gorgeous! x
Thank you so much for sharing your story Kate. I used to work as a paediatric nurse on a cardiac ward and know all too well the challenge a congenital cardiac condition like TGA can bring. Now, at four months pregnant, stories like Nino’s are even more powerful as I sit here with tears rolling down my cheeks. I can only hope I will be as strong and talented a mother as you – I am so grateful for your blog which has not only guided me slowly into the world of baking but is now guiding my journey into motherhood. Wishing Nino the best of luck with his recovery x
Thank you for sharing this story, and for reminding us what the NHS is really for. Good luck over the next few months, and enjoy your beautiful boy.
Beautifully written Kate. You had me a little choked up (now I’m a mum I’m all soft!). So glad to hear Nino is fighting and recovering well. Look forward to meeting the wee man over the summer sometime. Isobel sends him a VentureCo-baby high five!
As for weaning, we went with our instincts and started when Isobel was ready (about 5.5months). We do a mixture of purées and finger foods so she can experience both. There is way too much info so I decided to go with my gut instinct as I have with every other parenting thing! E xx
I’m so happy for you guys! I said some prayers for you on the 12th.
With the baby food I second Emma’s comment. Let your gut, and Nino, tell you how to do it. Don’t get to caught up in other people’s proselytizing. I did purees with my first guy but my daughter preferred to be more independent. One thing that helped was the idea that if people try anything, something like, 20 times, they will start to like it. Keep offering stuff that they initially reject, even if it gets frustrating!
Hi Kate & Luke,
I am so glad that Nino is doing well and getting stronger every day. A truly scary and sobering prospect for any parents, never mind experiencing it with your first child, but you guys handled it like seasoned pros. Nino is one brave little boy!
Phil
Beautiful post. You have a fighter of a little boy there.
As for weaning we went down the BLW route and started 1 week before 6m. Even then L didn’t really “get” food until around 8m. She now has a ferocious appetite! Since day 1 she’s more or less eaten what we eat and it’s certainly made us eat healthier. I recommend the same book as Nelly.
I read this on my phone last night but had to come and comment this morning! Thanks for sharing this with your readers. Hard to believe there can be such strength in one tiny little human being! So many good vibes to you and your family x
Amazing! Sending happy thoughts and hugs over the tinter-airwaves 🙂
What an incredibly strong and beautiful little boy you have! I cannot even begin to imagine how difficult those hours and days and weeks were, just seeing the photos as a ‘stranger’ was emotional… Yet, you did not forget to praise the system that made it possible. As a person born in a country where I could have gone bankrupt in such a situation that lives in Europe, I am eternally grateful for the NHS and think it is important to thank all those hardworking people out there, instead of just criticizing. So glad you are all back home!
Oh gosh I have tears streaming down my face and a lump in my throat. Joan is asleep on my chest and it’s all just so real and hard to think about, everything you have gone through… I think parents going through something similar will be so grateful you shared your journey. Nino, what a rockstar. He is amazing. As are those nurses and doctors. I am in awe and touched and so happy you are now home and starting to be able to focus on other, “every day” baby stuff (like food, yay!). Babies are just incredible, their strength and survival instincts. Stronger every day, you brave little boy. X
I am out of words I just want to send all my love to you!
So glad you were able to share your courageous story of your darling Nino’s surgery and to hear how well he is recovering. I hope and pray for you all that he will continue to make a good, strong recovery.
As a British expat living in the US, I am so very happy to hear of the tremendous care you got for Nino through the NHS. I so agree that, when going through something so traumatic, it is good not to have to worry about the financial end of things.
Wishing you all the very best.
I can barely imagine what you’ve been through and I hope the toughest bit is over so he can make a full recovery. Our son was born at 29 weeks so I know all about the teeny tiny needles they need for babies. You realise how powerful life is when you see how strong they are even at this age.
Sending you both (all!) lots of love and best wishes from the other side of the pond. Have been out of the country traveling so was not keeping up “as normal” in a timely fashion. A truly astonishing story and so inspiring. Thanks so hugely for sharing your amazing adventure!! And I hope to be able to visit in person soon to meet the little miracle in person.
You three are so brave and I hope that you find out that the surgery was a complete success. Nino seems to be such a strong baby boy! Sending so much love your way.
This is so moving Kate and extremely well written. It is obvious that Nino is a fighter and also that he has very much won the parent lottery. I wish you all a very happy and healthy future together.
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