Rosie's Surgery

Please be aware there are some post-op photo's of Rosie further down this page which some may find uncomfortable to look at. 

Monday September 19th 2011 saw Rosie finally get her slot at Alder Hey Children's Hospital, Liverpool, for the surgery required to repair her tiny heart. I really could write hundreds and hundreds of pages about this experience so to refrain from getting carried away I'm going to add to this page a little bit at a time.

The moment finally arrives...

It's important to know that the risk of death at the time of Rosie's op was as low as 3–5%, however, nothing quite prepares you for the moment you meet the surgeon pre-theatre and they tell you there is a chance your baby may not survive. These are facts they have to discuss with you and to their credit they spoke in a very matter of fact manner which is just what was needed at this point, I didn't need anything glossing over, I wanted to know facts. Whilst the stats are reassuringly low it didn't make the signing of the consent forms any easier. This was the moment all the waiting accelerated to reality for me personally. 

Only one of us was allowed to take her in for the anaesthetic and we decided it would be me. I was absolutely determined to 'man up' and be strong for both my girls, 'keep it together Tom' I kept telling myself as I felt it was vital that Rosie saw me smiling when she went to sleep. 

Her eyes gazed into mine, feeling safe in Daddy's arms, the bond I had with Rosie reached a whole new level at this moment and for a split second I had an urge to take her back home – after all she looked happy with no visible signs of heart problems, maybe they got it wrong and really she's fine?...

I reluctantly placed her on the bed and gave her my biggest smile whilst the tears streamed, quite an odd combination and probably not the most comforting of expressions for her to see! She looked at me as if to say, "I'm fine Daddy pull yourself together and let me get this over with". Then she closed her eyes...

I came back out to see Karen looking lost in the middle of the hospital corridor, we embraced for a moment with no idea at all what to do next, where do we go? We just hadn't thought about the waiting aspect at all.

Just prior to Rosie going in for surgery we had met the head surgeon who indicated the operation would take approximately five and a half hours. We ended up walking aimlessly, hand-in-hand, around the hospital grounds, then back to our accommodation, then to the canteen, then back to the room…constantly looking at the time – about an hour had passed, this was going to be a long day. I remember singing a song lyric in my head over and over, 'Beautiful girl, stay with me' which seemed to help me at the time, I'm not really sure why but in my own silly way I felt like I was communicating with her.

Eventually we settled down for a while in our room, kindly provided by Ronald McDonald House, Alder Hey – An independent Charity ran by the Alder Hey Family House Trust Ltd.
It was outside the entrance here that I saw a rose (the one on the blog header Рit's not just there as a clich̩!) it was as if it were a sign, okay so it wasn't, but at times like these you'll take anything for comfort and reassurance. Rosie was going to be fine РI just knew it.

Five and a half hours eventually passed and we went up to the ward she was admitted from to sit in the waiting room there, thinking any minute now...

A further hour and a half passed, totalling seven hours in surgery. I remember the last hour, every second felt like a minute, it was a very difficult period as we didn't know when we'd get the call from the Intensive Care Unit (ICU) to say we could see her. We didn't know if it was taking longer because of complications, we just had to sit tight.

When the call eventually came we raced up to to see her, the corridors seemed to treble in length and I felt like we were on a treadmill, trying to speed up but not going anywhere. As soon as we reached ICU I stood and took a deep breath, then we were escorted to her bedside.

I had never been in an intensive care unit before and really had no idea what to expect and I remember feeling like I'd stepped onto the set of some US hospital drama or something. There were (in my memory) about 15 nurses, frantically attaching things monitoring all sorts of different machines and drug levels, the surgeons chatting surgeon talk...I've since been informed there were only six people around her, four nurses and two surgeons! I felt so in the way though and was too scared to move – there was so much urgent activity and wires everywhere, machines bleeping.

Lay peacefully amongst all the mayhem was Rosie…I physically can't write down how I felt when I saw her, I've tried but its just a bit too distressing still, maybe I'll revisit this bit again another day in the future.

After the initial urgency, the surgeons and all but one nurse left her bedside and things settled down. We both sat and stared at Rosie in awe and I even remember feeling a sense of enormous pride in my daughter, so tiny, having come through the initial operation.

The nurse with us at the time explained in as simple terms as possible what each machine was doing, what the charts mean't etc. It goes without saying how much I respect the NHS but I really can't stress enough just how impressed I was with the work ethic of every nurse on the ICU – it wasn't simply a case of standing by Rosie's bed 'incase', they really put a full shift in, constantly busy, changing drugs, monitoring machines, liaising with doctors, filling out charts with 'military style' methodical precision, even a simple toilet break required a detailed de-briefing for the nurse offering the five minutes cover.

The longer we stayed by Rosie's bedside the easier and less daunting things became, something switched with me after the surgery and the initial shock of seeing her – rather than worry about everything (as I'm usually known for!) I became fascinated and somewhat engrossed in everything that was happening, I think it was my way of dealing with seeing all the tubes and scars on my baby girl. I dare say in many cases it's probably harder for people to imagine what we went through as parents than the actual reality of going through it, if that makes sense!

Rosie was on the ICU for a total of three days, in most cases it's 1–2 days, however during the second night we recieved a call to say they'd had to operate immediately to insert another drain as they'd discovered she had a 'pneumothorax' – a collapsed lung due to air being trapped between the lung and chest wall which prevents the lung from inflating fully. This was a little set back in terms of recovery time but we were assured it was very routine and no cause for major concern, although given our worn out state it didn't feel like that at the time.

So, on the fourth day post surgery, Rosie was finally given the green light to be moved from ICU and onto the ward. Whilst she wasn't completely out of the woods, it was a huge step in the right direction and the feeling of relief and excitement was unforgettable. As she was being moved along the corridors onto the ward I remember people looking confused as they saw Rosie on the bed, still connected to drainage tubes and wires then looking up to see Karen and I walking behind with the biggest smiles!

Once Rosie settled onto the ward and we had familiarised ourselves with her new environment my feeling of relief quickly turned back to one of slight worry. I'd become too accustomed to the 24hr bedside monitoring on ICU, it gave a lot of comfort knowing someone was watching her the entire time. The vibe on the ward was completely different, far more laid back and much less frantic and whilst eventually I realised this was a good sign, I did find it much harder to leave her in the evenings knowing she didn't have a nurse right at the end of her bed.



Before and after 7 hours of surgery...





Recovering...


One thing we weren't prepared for was how long we'd have to wait until we could hold her in our arms again. Five days in total... but that first cuddle, post surgery, was a moment I don't think either Karen and I will ever forget.


24 comments:

  1. Gets me every time this page Tom, such a hard thing to convey to others. Thought you'd like to know I went and checked on Rosie's rose bush at alder hey this week, it's been pruned but there will be buds there soon I'm sure x

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    1. Thanks Amy. Great to hear the rose bush is still there thanks. x

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  2. I can so relate to your story my daughter is nearly a teenager now but after birth it was discovered she had a bleed on her brain & all your words regarding the wait for the surgery, the ICU, & transition to a main ward are so familiar & touched my heart when I read it. May I say you have a beautiful daughter in Rosie & from experience she will teach you more than any reference book. Best Wishes for the future xx

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    1. Thank you so much for taking the time to write such kind words. You are so right too, Rosie teaches me new things everyday and I'm so grateful to her for that. All the very best wishes to you and your daughter.x

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  3. Thank you so much for writing your story. My beautiful granddaughter Elsie Mae was born on 25th May, 2012 and will be going into Alder Hey on 24th September for the same operation. Your story has really helped my Son Steven and his Wife Emma. I hope Rosie is now thriving and that Elsie will come through it as well as Rosie X

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    1. Wednesday will see the one year anniversary of Rosie's surgery. Rosie has come on so much since her surgery, I know of many other families that have had their babies go through the same operation all with complete success. Every month sees medical advancements and fine tuning to these proceedures so that's a positive thought to hold onto. I know only too well the anxiety and worry all of you will be facing now and there are very few words that offer comfort but stay strong and I wish you all the best. I'd love to hear how Elsie gets on. Thank you for your kind words and we'll all be thinking of your family on 24th. Much love. Tom. X

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    2. Tom, I am so pleased to let you know that Elsie Mae had her heart surgery on Tuesday which was a great success. She came out of ICU on Wednesday and came home yesterday. The doctors and nurses at Alder Hey cannot be praised enough for their dedicated hard work and compassion. We have to take care in the way we lift Elsie and cuddle her because of the stitches but she is smiling and happy and doesnt appear to be in too much pain. These babies are stronger than they look and I am so proud of her, my Son and my Daughter-in-law. I hope Rosie is still thriving and keeping you on your toes. Take Care. Sue Forrester (Very proud Grandma)

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    3. Hi Sue, thank you so so much for taking the time to reply and to let me know that everything went well. It's a difficult time for all the family and you too must be very relieved its over and Elsie is back home safe and sound. I hope you don't mind but I included your message in my latest post. Best of luck to you all.

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  4. What a wonderful, heartwarming and positive account! I have not experienced anything personally, but have been a nurse, so have been on "the other side" so to speak. God's Blessings on you all and I trust that Rosie will continue to bring you Joy, Love and Extreme Happiness.

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    1. Thank you Cynthia. The work all you nurses do is simply incredible and should never be underestimated. Lovely to have your feedback on the post too. Thanks again.x

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  5. I would like to let the parents & grandparents of Elsie May that I am also thinking of them. It truly is a difficult time. My story is very similar to yours. My son Liam had surgery in Belfast to repair an AVSD in May of this year. He was very sick after his surgery as his liver went into shock after the bypass (something which, we have been told, happens very rarely.)After nine days in ICU though, he got moved to the ward and has since come on leaps and bounds. We honestly cant believe how much of a difference there is in him. Before the surgery Liam never laughed, slept all the time, couldnt eat or drink (he was tube fed from birth) and was constantly sick. Now, he truly is a happy little man, rolling about, learning to sit up, laughing & smiling, spoon feeding, playing with his toys...
    As I was reading Rosie's story the tears were literally streaming down my face. I think Im only just now realising what Liam has been through. Its still a bit surreal to be honest. At the time I think you just get on with things just because you have to.
    Thank you for writing your story. Before Liam's op I searched the internet for stories about kids with DS who had had AVSD surgery but I can't ever remember reading an account as well-written and complete as this. Although the hospitals are great at letting you know whats involved with open-heart surgery, nothing compares to the experience of a parent who has been there. Best of continued health to Rosie & all your family xx

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    1. Thank you for your kind words. This paragraph sums things up perfectly: "I think Im only just now realising what Liam has been through. Its still a bit surreal to be honest. At the time I think you just get on with things just because you have to." Couldn't have explained it better myself. Looking back on the anniversary of Rosie's surgery was a strange day, of course we celebrated but it also hit home just what she had endured and I found it more emotional than I think I did at the time. Onwards and upward now. Best of luck and big hugs for little Liam.x

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  6. I too have sat reading this beautiful blog with tears running down my face. My beautiful daughter Eva has DS and had the same surgery for a complete AVSD in august 2011, signing the consent form was one of the hardest things I have ever done and I just wanted to pick her up and run from the hospital, never before has a day passed so slowly. Great ormond street hospital were amazing and were unfazed by the sleep deprived,
    stressed out mummy that stayed with her baby and
    asked lots of questions! The anniversary of her surgery
    was a funny sort of day, a celebration that she got
    through and has truly blossomed since then but it also
    brought back some of the feelings of terror that my
    gorgeous girly wouldn't make it through the surgery. As
    time passes I know the good bits will be remembered
    and the extremely stressful bits diluted and I will always
    be in awe of the surgical team who did an amazing "
    plumbing" job on my daughters heart and the rest of the
    staff who cared for her.
    My beautiful girl has had her life transformed by the
    surgery, from sleeping all day to bottom shuffling around
    the floor, learning to sign and having to be convinced to
    have a sleep during the day :) what a difference!
    Thank you Tom for your fantastic blogs, Rosie is a
    beautiful girl and their extra chromosomes make our
    children extra special ;)
    I look forward to reading more, take care and God bless you and your family, Laurax

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  7. Thank you for sharing your story. My daughter, Lily had her open heart surgery at 7 months for Tetrology of Fallot, at Vanderbilt Hospital in Nashville, Tennessee. She is now 20 and is such a miracle. The photos look so familiar, and the fear so clear to this day. Bless Rosie and your family. We are all connected through this experience and for the blessing of our beautiful angels.

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  8. The photos really tell the story. As the Mum of a 17 week old baby girl, I can't imagine your anguish - but look at her now - just gorgeous xx

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  9. Yes. Thank you for sharing your story. My daughter had her surgery at 10 months of age 7 years ago on 18 April. My husband gave her to the nurse who took her into the OR. We went to the food court. He couldn't speak because he was holding back his tears. Me. I wanted to chat and chat. I moved to the far end of the food court so he could be alone with his thoughts and feelings for a bit. All turned out very well. She was out of ICU within 24 hours, and she hasn't stopped since. Her whole quality of life picked up and got better. Today she is a busy, active, thriving almost 8 year old! We love her to pieces. Thank you for sharing. from Deborah Baker, Canadian Maritimes

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  10. thank you for your story..sharing your life...our baby anjali also is trisomy 21 and has had her avsd repaired...three months ag. she is seven months old now...i cherish every second with her..she is identical to your precious Rosie..except with brown hair! they are both beautiful children...and the most wonderful blessing a parent could ever ask for.......goodluck always, and keep the faith and love going always for your beautiful daughter...she is wonderful!

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  11. Your daughter is so so beautiful. And so incredibly lucky to have so much adoring love surrounding her. What a gift !

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  12. Hi Tom,
    I just stumbled across your blog from the bbc news website and I have been glued to it since! A great blog all round!
    I had AVSD surgery aged 7 back in the mid 70's when it was still very much "pioneering" and the medical advances now are spectacular. If anyone is in any doubt about the success of this surgery - I recently cycled from London to Paris - 300 miles in 4 days! There will be no stopping Rosie now!

    All the very best to your are your family x

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    1. My grand daughter to be has been diagnosed with avsd, shes due in November and reading this and the other comments makes ne feel so positive! X

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  13. Gosh what a great blog.
    Our second daughter (third child) is due in march 14 and our story is very similar to yours. A 1 in 5 Down's risk with confirmation after CVS. She also has a CAVSD. The chapter about Rosie's surgery is very hard reading, but incredibly reassuring. Like you, reading real peoples stories is helping immensely. Please keep up the good work, you've just gained another follower! :-)

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  14. I came across this blog on the BBC1 website. It is wonderful. My 9 yr old daughter has tetrology of fallot so we have been at Alder Hey too going through all those moments three times. Sadly the pics of her in ICU having her first op are lost somewhere on a broken computer. I did write a diary though throughout the big fix op week & she loves me to read it to her, especially the bit about her little brother & an exploding bag of crisps at our Ronald McDonald House bedroom. I wish I could put something together for all mums & dads going through the same things & be of more help to those going through things thinking the worst but just hoping for the best. All the best to Rosie & your family x

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  15. Thank you for letting me confront my fears of potential surgies through your delightful family.

    Right on, Daddy.

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  16. Hi my future grand daughter has been diagnosed with a avsd and will need open heart surgery. Your story brought tears to my eyes! Xxxx such a loving family

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