I met Louise during my first ever ‘real’ job and we’ve stayed in contact ever since,first via email then Facebook and I was overjoyed when she announced her pregnancy in 2011. Her daughter, Jessica, was diagnosed with a Congenital Heart Defect during their 20-week scan leaving Louise and her husband, Michael, facing the difficult decision about her care, with medical advice suggesting that Jessica would not survive birth. Battling the odds, Louise and Jessica underwent in-vitro surgery which enabled Jessica to be born, then Jessica has had numerous surgeries since, with more planned for the near-future. I catch up with warrior Jessica and her true Wonder Woman mum, Louise.
GCH: Motherhood has given me a wealth of embarrassing moments (frankly, to add to an already impressive collection!). Can you tell us one of your embarrassing motherhood mishaps?
LG: Tiredness makes us do daft things as mums. I recently found myself tipping the contents of a potty into the kitchen bin instead of down the loo.
GCH: What’s your guiltiest pleasure?
LG: I sometimes shut myself in the kitchen and eat chocolate. I usually have some squirreled away somewhere!
GCH: I frequently joke about needing a LOT of tea to get me through some days with a cheeky toddler and crazy pup (or is that crazy toddler and cheeky pup?). So what’s your drink of choice – tea, coffee, wine, beer or something else?
LG: I tend to be a coffee drinker. That first cup in the morning is blissful. It’s amazing how it can transform me from a harpy to a human being. The transformation has not gone unnoticed by my girls though. Jessica will often ask me “Do you need coffee Mummy?” if I am a bit grumpy in the mornings!
GCH: You’re a trained midwife. What would you tell any expectant mum is a must have in her maternity bag (mine is face spritz, if nothing else it gave hubby something to do!).
LG: Face spritz was amazing! It was one of my must-haves both times.
My midwifery days are quite some way behind me now. But other than the usual essentials, I would say cereal bars and Lucozade were another must-have. They were great for giving me energy during labour and keeping hubby going too. Keeping birth partners fed is also important. Hubby almost passed out during my labour with Jessica and we realised that he hadn’t eaten anything for hours at that point. He felt much better when he was given some toast and jam!
GCH: Also, what was one of the best aspects to your job as a midwife? And one of the worst?
LG: That first cry of a new baby and the pure joy on new parents’ faces was the most magical thing. No matter how many times I saw it, it never lost any of that magic. I felt like I got to see a little miracle happen on a regular basis.
The worst is when a baby dies. It is the most heartbreaking thing. I have never forgotten that awful feeling of discovering that a baby had died in the womb and I still remember every single family I looked after whose baby was born sleeping.
GCH: Do you think you’ll return to midwifery?
LG: I don’t know at the moment. My registration lapsed a few years ago and I would need to retrain if I was to return. I have no plans to return in the foreseeable future. Hubby works in the events industry which has very irregular hours. If I went back to shift patterns or being on-call 24-7 as I was as an independent midwife, it would make childcare difficult to arrange. I now work part-time and mostly from home as an HR Manager which fits well with family life and means I can be there for the children when they need me. Any plans to go back to midwifery would be unlikely to happen before the children are old enough to be able to look after themselves.
GCH: Jessica was diagnosed with CHD at 20 weeks. Can you briefly explain what CHD is and what treatment she had?
LG: CHD stands for congenital heart defect (or congenital heart disease which I think is a less accurate term). There are lots of different types of CHD – most people have heard of babies being born with “a hole in the heart” which covers some CHDs. Jessica has quite a complex CHD – she has hypoplastic left heart syndrome (HLHS) and a couple of other abnormalities. In children with HLHS, the left side of the heart is very underdeveloped. Basically this means she only has half a working heart.
With Jessica, there was also an added complication which limited the blood flow into the left side of her heart even further. This meant that her prognosis was particularly poor and we were told at 22 weeks’ pregnant that she wouldn’t be suitable for post-birth surgery. Thankfully the doctor also briefly mentioned an in-utero procedure which was being performed in Boston, USA. We considered going to the USA but were very lucky to be offered the procedure in the UK. This was carried out when I was 28 weeks’ pregnant.
Jessica had her first open-heart surgery when she was eight hours old. She had a second procedure a week later. Since then she has had two further open-heart surgeries (at 3 months and 7 months old) and several cardiac catheter procedures. She is due to have her last planned heart surgery in the next month or so.
This post explains a little more about the surgeries and how Jessica’s heart works compared to a normal heart: https://littleheartsbiglove.co.uk/jessicas-handmade-heart/
GCH: You’re a prolific writer and you’ve enjoyed musical theatre. How has being creative helped you cope with Jessica’s diagnosis?
LG: Writing has always been my way of processing my thoughts, especially if I find it difficult to talk about them. I find writing incredibly cathartic. I also enjoy drawing which is another way of processing my thoughts and I sing regularly too. Singing is something that makes me feel happy so is good for relieving stress.
GCH: Many people have described you as a Super Mummy, a title you politely declined in this blog post. However, you’ve coped with Jessica’s diagnosis with extreme grace and positivity. How do you manage to do that?
LG: My faith has helped hugely with this. My belief that God is walking this journey with us and helping carry us along the way when needed has helped give me the strength I need to get through each day and try to focus on the positives. We’ve also had so much support, love and prayers from friends and family which I am very thankful for. Knowing that we are held in so much love helps to keep me going.
I’m not always positive though! There are many times when I shut myself away and fall apart. I think it’s important too to feel able to let it all out every now and then. I don’t think I could focus on the positives if I didn’t give myself space to let go of some of the fear and worry too.
GCH: You set up your blog Little Hearts Big Love to document Jessica’s condition. Has it helped you connect with other ‘heart parents’?
LG: I’ve connected with a few heart parents through my personal blog and Jessica’s blog. Knowing that we are not alone on this journey makes a big difference. I am in contact with other parents who are further on in this journey who help to give me hope for the future. In the same way, our story helps to give hope to those who are setting out on their heart family journey.
GCH: Jessica was the first baby to undergo in utero surgery in the UK. Since Jessica was born, have you seen an improvement in the care, diagnosis and treatment of other babies with similar conditions?
LG: There are quite a lot of different in utero procedures for various conditions, some of which have been around for some time. Jessica had a procedure to open up a hole between the top two chambers of her heart which was done by inserting a balloon on a wire into her heart and inflating it. As far as we know she was the first (and possibly still the only) baby to have this done in the UK. I’ve only ever met one other heart mum online whose child has had a similar in-utero procedure and she lives in Australia.
With regards to improvements, I’ve been involved with raising awareness the heart charity Tiny Tickers for a couple of years. They do a lot of work to improve the early detection of heart conditions to help improve outcomes for heart babies. I am sure that surgical techniques also continue to improve.
As for Jessica’s in-utero surgery, I think it was very much a case of being in exactly the right place at exactly the right time. I am not sure that if I was pregnant with her today that we would have had this option without having to travel abroad. Our consultants back then had previously been involved in in-utero procedures (although not the one Jessica had). Their colleague, Dr Wilson, who performed the procedure, was on sabbatical in the States when I was pregnant. He happened to be back in Oxford the weekend after I first asked our consultants about the possibility of travelling to Boston for in-utero surgery and then was back again when I was 28 weeks’ pregnant – which is the ideal time for this surgery to take place. He’s now permanently based in the US.
Our main consultant retired a couple of years ago and the other one we saw regularly focuses on fetal cardiology so is no longer involved in our care. Since our main consultant retired, our care in Oxford has felt more disjointed. Our experiences with Southampton have always been very positive though and we are able to phone the ward there if we have any concerns about her health heart-wise. Our local hospital has also been very good and we have open-access to the children’s ward so can take Jessica straight there if she needs urgent medical attention.
GCH: You’ve written about your husband Michael and his journey dealing with Jessica’s condition. How have you supported him through it all?
LG: We very much support each other through this journey. The most important thing for us is making sure that we talk about our worries and concerns rather than bottling them up. Michael is better at taking in the information at appointments than I am – I am much more emotional in my initial responses whereas he tends to process it more rationally and then gets emotional later on. We balance each other out very well in this respect.
For me, being able to work from home and be flexible has helped. Michael works in the event industry which can be unpredictable and often means long hours when working on an event. He tries to be at as many appointments as he can, but I can work around hospital stays and appointments much more easily.
GCH: You’re thinking of turning Little Hearts Big Love into a book. Can you tell us more about this project?
LG: I’ve written a draft of our journey so far but I’ve not done any more with it at present! That particular project is on hold at least until after Jessica’s next operation.
I have written and illustrated a book for Jessica to help prepare her for having heart surgery. I’m looking into perhaps making this more widely available to help other heart families.
GCH: What are your hopes for your girls?
LG: To grow into young women who are loving, kind and unafraid to follow their dreams. I hope that they will grow up knowing that they are unique and wonderful just as they are; that a little love and kindness goes a long way and to see obstacles on their way as challenges to be met. I hope that they will learn that there is beauty in the journey, even when it means taking a different path to the one that you had hoped for.
GCH: Tell us a secret.
LG: I had an imaginary friend as a teenager. I still had occasional chats with him up until my early twenties.
Many thanks to Louise for thanking the time to chat and I’m sure we’re all sending positive vibes to little Jessica as she moves towards her next surgery. I’ll keep you all updated as to how this loving, inspirational family gets on.