In pursuit of a miracle - Little Hearts, Big Love

In Pursuit of a Miracle

“If I was seeing this in a newborn baby, I would be advising against surgery as it is so unlikely to be successful.”

I was 22 weeks pregnant with my first baby and my world had fallen apart two weeks earlier when we had found out that our baby girl had a serious and complex heart defect. We were meeting the consultant from the surgical team in London for another scan to discuss the possibility of palliative surgery after our baby was born to give her a chance of survival. Now we were being told the devastating news that our baby’s heart defect was so severe that she was extremely unlikely to be a suitable candidate for surgery, that we would be offered compassionate care after she was born and that she would probably only live for a few hours. The consultant was still talking, telling us about the kind of care we would expect to receive after our baby was born, but I was barely taking it in. Then he added something else:

“I should probably mention, for completeness, that there is a children’s hospital in Boston that performs in-utero surgery for these kinds of conditions. It’s quite on the edge and radical though and I really don’t think it would be suitable in this case, but I felt I should mention it just for completeness.”

The consultant’s tone was dismissive. Michael and I both shook our heads, instantly sensing the dismissiveness of the comment.

“I’m sorry I couldn’t give you better news,” the consultant said and with that, we were shown out into the corridor.

We managed to hold back the tears until we found ourselves in the hospital chapel a few moments later where we broke down, overwhelmed by our grief and the thought that as soon as we got to say hello to our baby, our little Jessica, we would start the process of saying goodbye. In that moment of complete and utter brokenness, I clung to the only thing that I felt could give me any strength to endure the path ahead – the feeling that God was so much bigger than all of this and that somehow we would endure. We prayed desperately for a miracle.

In Pursuit of a Miracle - Little Hearts, Big LoveOver the next few days, I found myself coming back to the consultant’s words about the children’s hospital in Boston. At first, I dismissed it – the consultant had seemed so sure it would be the wrong thing for us – it would be incredibly expensive – how would we ever afford it? – but I remembered too sitting in the waiting room before the appointment praying that we would leave it with some hope. Was this that glimmer of hope I had prayed for?

Michael and I discussed it. We felt that we needed to at least explore the idea of going to Boston and make contact with them, but that we would trust God to show us whether this was the right thing to do. We knew that it would be incredibly expensive, but felt that if it was God’s will for us to go to Boston, then somehow the money would be provided. We also knew that we needed a very clear sign to follow this path if it was the right one and we asked God to make it clear if this was His will for Jessica and that if it was His will that we went for in-utero surgery, that it would be successful. For the first time since the 22 week appointment, I started to really feel that there was hope for our daughter.

We contacted our consultant in Oxford to discuss being referred to Boston. She didn’t think it sounded like a suitable option but agreed to discuss it with the team before our next appointment which was just a few days away.

At first it seemed the news at that next appointment was even worse. We were told that the severity of Jessica’s heart condition meant that there was a significant chance her heart would fail during my pregnancy. We were reminded of all the things we needed to seriously consider – not just the financial cost, but the risks of the surgery, the uncertainty of how long we would need to stay, finding accommodation, the lack of social support. Still, I felt that if this was really the right thing to pursue, then somehow all these things would fall into place. I reiterated that if going to Boston was the right thing to do then we wanted to pursue it.

There was a moment of hesitation and then our consultant told us that he had discussed our situation with a colleague, Dr Wilson, who was on sabbatical in the States but who had been back in Oxford for the previous weekend. Dr Wilson had had some experience of fetal surgery, although not the particular procedure we were exploring, and was due to return to Oxford briefly when I would be 28 weeks’ pregnant – the ideal time for the fetal surgery. He was willing to attempt the procedure, if we were willing to accept the risks that it might not be successful, that Jessica might not survive it and that even if successful it could cause premature labour and Jessica might be born before post-birth surgery would be possible.

It felt like the answer to our prayers. And so, at 28 weeks, we headed off to Oxford ready for the surgery. The procedure would involve inserting a needle through my bump into Jessica’s umbilical vein. She would be given anaesthetic to sedate her through this and then a wire would be passed through the needle and guided through the vein and into the heart under ultrasound, which was felt to be safer than inserting the needle directly into the heart. Once inside the heart, a balloon would be passed along the needle and inserted into the hole between the top two chambers (the atria) and then inflated to enlarge this hole and improve the blood flow into the left side of Jessica’s heart. I would have a local anaesthetic and would be awake throughout (much to my relief – I had been haunted by the thought of being given a general anaesthetic and then woken up with bad news).

We were told that the risk of Jessica not surviving the procedure were “higher than ten percent and lower than fifty”. We took a deep breath and signed the consent form, knowing that this was the only way we would give Jessica a chance of survival. Shortly after, we were shown into a very large scan room where everyone was prepped and ready for the procedure – seven consultants all with very specific roles in assisting the surgery. Jessica was in an awkward position though and the atmosphere in the room felt quite tense at times. It took several attempts to get the needle into the umbilical vein as Jessica kept trying to kick it out but eventually she was sedated and still. I prayed that I would feel those beautiful movements again. Getting the wire passed through the needle though proved to be very tricky. For almost two hours, the team attempted to pass the wire through without success. Michael kept squeezing my hand. Out of the corner of my eye, I could just about see the monitor, focusing on that tiny little heart that continued to beat. After two hours, the team decided to call a halt to the procedure and try again the next day.

Feeling Jessica hiccupping and starting to move again as she woke up later that night was a beautiful feeling. I was scared at the thought of having to go through it all again but knew that I had to do it, had to give her every possible chance.

At first, it seemed like we were due to have a repeat of the previous day. Jessica was still in the same position which made the procedure more difficult. Trying to insert the wire into the umbilical vein and pass it through the vein into the heart was proving to be tricky and as the moments ticked by, it seemed perhaps it just wouldn’t be possible to do the procedure.

“We’re just going to have go straight into the right atrium,” Dr Wilson said eventually. His tone seemed to imply it was ‘kill or cure’ time. I closed my eyes and prayed hard. This time the needle went in and he managed to guide it into the right place, insert the balloon and inflate it. Jessica’s heart rate was increasing and then the wire was out again, and it was all over. I could hear the sound of Jessica’s heart beat on the monitor, and a wave of thankfulness washed over me – it was over and Jessica was still alive. Her heart rate was slowing down to more normal levels and settling again. Later on, I felt the sensation of her hiccupping and moving again and a sense of joy flooded over me. We knew that there was still quite a journey ahead, but this first step had been taken and we had given our baby girl a chance.

We (and our wonderful cardiac team) went out on a limb and almost three years to the day of that procedure, I see the sweetest fruit of that moment of stepping out in faith. My beautiful girl, two years and nine months old, full of joy, laughter and smiles and blessing us with so many wonderful happy moments to treasure and enjoy. We thank God every day for the precious gift of being able to watch Jessica grow and thrive. We know that there will be more moments ahead where we will have to once again go out on a limb and put our trust in God and in the hands of the surgical team and we pray that those moments will continue to bear fruit; that we will have many more happy days with Jessica in the future.

 

Written in response to the prompt:

“Why not go out on a limb? That’s where the fruit is.” Mark Twain

Country Kids 08

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Little Hearts Big Love

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70 thoughts on “In Pursuit of a Miracle

  1. pottymouthedmummy

    My word, I welled up reading this. Well done for pursuing that procedure and wow – what a little miracle she is. A lovely lovely story, thank you for sharing xx #theprompt

    Reply
  2. Sara (@mumturnedmom)

    Oh, Louise, I cannot imagine what you must have been going through although it sounds like you and your husband were incredibly brave and strong for your daughter. I had tears in my eyes by the end of this post, I can picture you watching your beautiful daughter as you wrote this. Wonderful post, thank you so much for linking to #ThePrompt xx

    Reply
    1. liquoriceuk

      Thank you – it is three years today since the first attempt at this surgery and I am feeling very blessed. Have been thinking about it all a lot this week and your prompt was perfect for reflecting on it all x

      Reply
    1. liquoriceuk

      Thank you – I think she is too, but I am very biased! She is my little miracle and I am so very thankful for everything that has helped get her here today.

      Reply
  3. Mummy Tries

    What a beautiful post. I’m so pleased that your risks have paid off and you are now eating the sweet fruit every day. I could not imagine the roller coaster of emotions you’ve gone through, but you and your partner sound rock solid and have dealt with it all amazingly well. Look forward to following your journey xx

    Reply
    1. liquoriceuk

      Thank you – it has been a rollercoaster but we have had so much support along the way which has really helped and to see my little girl here and doing well is the best gift ever x

      Reply
  4. Jenny

    What a loving and inspiring post. You are so brave and fought for what you knew was worth the risk for your beloved little girl and wow what an amazing story. I cried reading this. So powerful and so amazing. Love the photo too. I bet it was such a rollercoaster ride but hope you have had the support you need for it all! Thank you for linking to Share With Me #sharewithme

    Reply
    1. liquoriceuk

      Thank you -it has been a rollercoaster ride but seeing how well my little girl is doing makes every moment worth it. We have had amazing support along the way which has helped hugely x

      Reply
  5. Super Busy Mum

    What a beautiful, enticing post!! Wow…so pleased you guys went with your gut feelings, got the procedure and how that beautiful girl is happy and healthy and WITH you. Loved this post. xx

    Reply
    1. liquoriceuk

      Thank you so much – we were very lucky to be able to have this done and there is not a day that goes by that I don’t look at my daughter and feel very thankful for it all x

      Reply
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  12. Zena's Suitcase

    What an amazing and inspiring story. You have all been through so much, and have the most beautiful daughter as a result. So beautiful written too x

    Reply
  13. Iona@redpeffer

    I can’t imagine the emotions you must have both felt having to make such huge decisions, but you’ve written them down so beautifully that it gives a sense of them nonetheless. Faith, hope and love should never be underestimated x

    Reply
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  15. Single Mum Speaks

    Wow Louise, I couldn’t read this and not comment. What an incredible little girl you have, and how terrifying to have surgery in utero. Glad that your daughter is now doing so well.

    Reply
    1. Louise Post author

      Thank you – it was terrifying, but so amazing to be able to look back on it all now with Jessica here and doing so well. We couldn’t even have dared to dream that we’d have that five years ago.

      Reply
    1. Louise Post author

      Thank you Sarah – can never thank the surgical team enough for all they did back then and so amazing to be here now with Jessica doing well x

      Reply
    1. Louise Post author

      Thank you – sorry for making you cry though. It’s been quite a journey so far but worth every moment to be here now with Jessica doing well.

      Reply
  16. Carol Cameleon

    Ok, tears welling as I type this… what an absolutely incredible journey for you all Louise. It’s stories like this that make you realise how fragile life is. A beautiful outcome…

    Reply
    1. Louise Post author

      Thank you Bridie – it was a very scary time but worth it all to be here with her now doing so well x

      Reply
  17. the frenchie mummy

    I am so happy I read your story. It gives me high hope for my baby. I have to admit that I also feel a bit guilty. I am so worried about Baba’s VSD and yet there are some conditions like your little one that are way worse!
    It’s amazing what doctors can do these days. The operation you had to go through is an amazing achievement for science.
    I am so glad to see Jessica being so happy. Thank you for sharing!
    #SharingtheBlogLove

    Reply
    1. Louise Post author

      Thank you and glad my daughter’s story has given you hope. Please don’t feel guilty though – the thought of your baby having to have surgery is scary no matter what it is for. Hope all goes well when Baba has to have surgery x

      Reply
    1. Louise Post author

      Thank you Charlie – I’m so glad that we took that risk and to see how well Jessica is doing now is such an amazing feeling 🙂

      Reply
  18. laura dove

    Oh gosh I am in bits, that is such an emotional, heart warming story. I am so, so pleased that your daughter made it, after everything you have been through, I can’t even begin to imagine how special she must be. Thank you for sharing this, #sharethebloglove

    Reply
    1. Louise Post author

      Thank you Laura – it was quite an experience but so amazing to see how well she is doing now.

      Reply
  19. Katy - Hot Pink Wellingtons

    Thank you so much for sharing this Louise. Every time I read yours and Jessica’s story it seems so amazing that the medical world can achieve these things. I can imagine that must have been the longest two hours of your life undergoing the procedure, and then to have to go through it all again must have been so harrowing. But you have the most amazing outcome in Jessica – I’m sure your story is so helpful and comforting to anyone going through a similar situation. Thanks so much for sharing with us at #SharingtheBlogLove!

    Reply
    1. Louise Post author

      Thank you Katy – it is amazing what modern medicine can do and yes it was very scary undergoing the procedure twice but so worth it all to see how well Jessica is doing now. Lovely to link up with #SharingtheBlogLove and thank you for hosting 🙂

      Reply
  20. charlotte

    I am in tears right now, I cannot imagine what you went through. It still amazes me what they can do in this day and time. I’m so happy this story had a happy ending #sharethebloglove

    Reply
    1. Louise Post author

      Sorry to make you cry Charlotte. It is amazing what doctors can do – we have been so lucky.

      Reply
  21. karen

    Such a difficult thing to have gone through, it’s amazing what they can do now to save lives. I’m so happy that it worked for you, beautiful post. Thank you for sharing with us. #sharethebloglove

    Reply
    1. Louise Post author

      Thank you Karen – it certainly is amazing what doctors can do and I’m so thankful for them giving Jessica a chance.

      Reply
  22. Laura - dear bear and beany

    Even though I knew the outcome I as still holding my breath reading this Louise. It’s amazing what they achieved and you now have your beautiful Jessica. I know the journey continues for you all. Thank you sharing with us and linking up to #sharingthebloglove X

    Reply
    1. Louise Post author

      Thank you Laura – it was so amazing that we were able to be given that chance for Jessica and to see her doing so well now is wonderful. Lovely to link up to #sharingthebloglove and thank you for hosting 🙂

      Reply
  23. Leandra

    Your story is such an inspiring one, you’ve been through so much. I’m so glad Jessica is well and things worked out for you xx #sharingthebloglove

    Reply
  24. Rebecca

    Oh Louise, this is such a beautiful and moving post. I can’t begin to imagine what you have all been through but what an inspirational story of faith and hope. You have a beautiful family and you are wonderful people. Enjoy every precious moment. Xx #Sharingthebloglove

    Reply
    1. Louise Post author

      Thank you so much Rebecca – it has been quite a journey but worth every minute to see how well Jessica is doing now. We’ll certainly be making the most of each precious moment – especially now that the threat of the next surgery has lifted for a bit x

      Reply
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  26. Yvonne

    Louise, I just begin to imagine what you and your family have been through. I was on the edge of my seat throughout this post even though I knew the outcome was a positive one. So glad Jessica is here now for you to hold her close xxx

    Reply
    1. Louise Post author

      Thank you Yvonne – it has been a scary journey at times but so worth it all to have Jessica here now and doing so well x

      Reply
  27. Cal at Family Makes

    The more I read of your story, the more I realise just what an absolute miracle Jessica is, and what a wonderfully strong family you have all been. Thank you for being brave enough to share this. #SharingTheBlogLove

    Reply
    1. Louise Post author

      Thank you Cal – she certainly is my little miracle and it is such a joy to see how well she is doing now 🙂

      Reply
  28. Mackenzie Glanville

    Such a beautiful and inspiring daughter you have, what a blessing, she truly is a miracle and a fighter, you must be so proud of her. All babies are a miracle of course, but some are just extra special. You are amazingly strong too, so glad she is here and sharing her smile with the world xx

    Reply
    1. Louise Post author

      Thank you Mackenzie – she is certainly my little miracle and it is amazing to see how well she is doing now.

      Reply

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