“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. Two weeks’ earlier, at the 20 week scan, my world had fallen apart. Our baby girl had a serious and complex heart defect. Now we were meeting the consultant from the surgical team in London for another scan to discuss our available options. Our baby girl needed to have surgery after birth in order to have any chance of survival. Now we received the devastating news that her heart defect was so severe that she was extremely unlikely to be a suitable candidate for surgery. Instead, we would be offered compassionate care – making her comfortable until she passed away. 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 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. 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. We shook our heads, and didn’t ask any more.
“I’m sorry I couldn’t give you better news,” he said, and with that, we were shown out into the corridor.
We stood there staring at each other for a moment. Neither of us wanted to break down in the corridor. We needed somewhere safe, somewhere private, somewhere we could be alone. My first thought was the hospital chapel. Somehow we managed to hold back the tears until we reached it. Then 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 one thought. 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; that somehow we would endure. We prayed desperately for a miracle.
A glimmer of hope?
Over 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? Then I remembered my prayer in the waiting room before the appointment. I had prayed that we would leave with some hope. Was this the glimmer of hope I had prayed for?
Michael and I discussed it. We felt that we needed to at least explore the idea and make contact with Boston Children’s Hospital. We felt strongly that we needed a very clear sign to follow this path if it was the right one. It would be incredibly expensive, but we trusted that if it was God’s will for us to go to Boston, then somehow the money would be provided. We asked God to make it clear whether this was His will for Jessica and that if it was His will then the surgery would be successful. For the first time since the 22 week appointment, I started to feel that there was hope for our daughter.
We contacted one of our consultants in Oxford to discuss a referral to Boston. She listened sympathetically, but expressed doubts over it being a suitable option. However, she 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. The severity of Jessica’s heart condition meant that there was a significant chance her heart would fail during my pregnancy. Our consultants reminded us 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 choice, then somehow all these things would fall into place. I reiterated that if going to Boston could help Jessica, we wanted to pursue it.
There was a moment of hesitation. Then one of our consultants told us that he had discussed our situation with a colleague, Dr Wilson. Dr Wilson was currently on sabbatical in the States but had been back in Oxford for the previous weekend. He had some experience of performing fetal surgery, although not the particular procedure we were exploring, and was due to return to Oxford briefly in a few weeks’ time. I would be 28 weeks’ pregnant when he returned – the ideal time for the fetal surgery. Dr Wilson was willing to attempt the procedure, if we were willing to accept the risks. It might not be successful, or Jessica might not survive it. Even if it was successful it could cause premature labour and Jessica might be born before post-birth surgery would be possible. It was risky, but it felt like the answer to our prayers.
In-utero surgery
A few weeks later, we went to Oxford for the surgery. The procedure involved inserting a needle through my bump into Jessica’s umbilical vein. She would be given anaesthetic to sedate her though this needle. Dr Wilson would pass a wire through the needle and use ultrasound to guide it through the vein and into Jessica’s 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). The balloon would then be 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. This was a huge relief. I had been haunted by the thought of being given a general anaesthetic and then woken up with bad news.
The risk of Jessica not surviving the procedure was “higher than ten percent and lower than fifty”. It sounded scarily high. We had no choice. It was Jessica’s only chance of survival. We took a deep breath and signed the consent form.
The consultant took us into a very large scan room where everyone was prepped and ready for the procedure. There were seven consultants in all – each with a very specific role in assisting the surgery. Jessica was in an awkward position though. The atmosphere in the room was tense. It took several attempts to get the needle into the umbilical vein. Jessica kept trying to kick it out. Eventually the needle went in and Jessica was sedated. The movements stilled. I prayed that I would feel those beautiful movements again.
Getting the wire to pass through the needle proved to be very tricky. For almost two hours, the team tried unsuccessfully to pass the wire through. I stayed as still as I could, silently praying that Jessica would make it through. Michael kept squeezing my hand. Out of the corner of my eye, I could just about see the monitor. I kept my focus 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.
Jessica was fine but she would have to go through it again. As the anaesthetic wore off and she started to wake, I felt her hiccup. It was the most beautiful feeling in the world. The thought of having to go through it all again was frightening, but I knew that I had to. I had to give her that chance.
The next evening, the team tried again. At first, it seemed much the same as before. Jessica was in the same position, making the procedure more difficult. Dr Wilson tried again and again to pass the wire through the needle and guide it into the heart. Each attempt proving unsuccessful. The moments ticked by. Once again I found myself praying as I stared at the tiny heart on the screen. Please let it work… please let her survive it…
“We’re just going to have go straight into the heart,” Dr Wilson said eventually. His tone implied it was ‘kill or cure’ time. I closed my eyes and prayed hard. The needle went in. This time he managed to guide it into the right place. He inserted the balloon and inflated it. I could hear Jessica’s heart rate increasing. Another inflation. 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, slowing down to normal levels and settling again. A wave of thankfulness washed over me. It was over and Jessica was still alive!
Later that evening, I felt the sensation of her hiccupping and moving again. I wanted to sing for joy as I thanked God again and again. This was the miracle we had so desperately prayed for. Our baby girl had a chance to survive. We had taken the first step on the journey. There would be many more to come, but we had hope.
We (and our wonderful cardiac team) went out on a limb. Today, I see the sweetest fruit of that moment of stepping out in faith. My beautiful girl, full of joy, laughter and smiles. So many memories created; 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. For now she is healthy and doing well.
The road ahead is still a challenging one. There will be more heart surgery in the future. Our little girl’s life will once again be in the hands of the surgical team. We will put our trust in God and pray for Jessica to survive. Each time, it is a little harder than before but we hold fast to hope. Focusing on enjoying the moments we have now and hoping and praying with all our might that we will have many, many more of them.
Written in response to the prompt:
“Why not go out on a limb? That’s where the fruit is.” Mark Twain
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
Thank you. It is three years today since we went in for it so am feeling very blessed 🙂
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
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
Such an incredible and inspiring story! Your little girl is clearly one in a million. x
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.
What a beauiful post! Wow. That is a BIG risk and definitely one worth taking. Thank yo for sharing something so personal and moving. x
Thank you – it was definitely one risk worth taking – we have taken many more since but this was the first step on the journey.
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
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
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
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
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
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
So glad it worked out and even though I know everything went well I was still on tender hooks reading this. I can’t imagine how you were feeling.
It was a very scary time but we held on to every little bit of hope we had and it helped keep us going.
This is such an amazing post. My heart was racing just reading it, even knowing the successful outcome. I’m so glad Jessica is here today and doing so well. xxx
Thanks Maddy x
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
Thank you Zena 🙂
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
Thank you Iona – it was quite a journey but so glad that Jessica is now doing so well x
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.
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.
Beautiful post and an amazing story – it’s so lovely to read about the hope and faith you and the surgical team all put into each other, and to see that lovely, smiling face as the result x
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
Such a beautiful post – I had a little cry to be honest! I cant even imagine what you and your husband must have gone through. #triballove
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.
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…
Thank you Carol – it’s amazing to look back and see how far we’ve come.
Oh Lou, this is so beautiful. How terrifying it must have been for you all – but so happy for you that she’s now doing so well x #triballove
Thank you Bridie – it was a very scary time but worth it all to be here with her now doing so well x
Wow! Amazing story. Isn’t it just incredible what doctors are able to do these days? Such clever people.
#triballove
Thank you – it certainly is amazing what doctors can do! 🙂
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
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
This is just wonderful – I’m so pleased I came across your blog! Sometimes in life you have to take huge risks, and as you say – place your faith elsewhere. What a beautiful little girl you have. Charlie x #sharingthebloglove
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 🙂
Thank you for sharing this story. What an experience you have been through! #sharingthebloglove
Thank you Kat – it certainly has been quite a journey!
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
Thank you Laura – it was quite an experience but so amazing to see how well she is doing now.
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!
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 🙂
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
Sorry to make you cry Charlotte. It is amazing what doctors can do – we have been so lucky.
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
Thank you Karen – it certainly is amazing what doctors can do and I’m so thankful for them giving Jessica a chance.
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
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 🙂
She’s clearly meant to be here, a true gift. Gorgeous girl, with very brave parents. Xxx
#Sharingthebloglove
Thank you Cat – she certainly is the most precious gift I’ve ever been given 🙂
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
Thank you so much Leandra – it is wonderful to see Jessica doing so well now.
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
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
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
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
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
Thank you Cal – she certainly is my little miracle and it is such a joy to see how well she is doing now 🙂
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
Thank you Mackenzie – she is certainly my little miracle and it is amazing to see how well she is doing now.