Cerian Baldwin was one of the Association’s founding Trustees from 2016-2018, after which she took a break to focus on her upcoming IVF treatment. Since then, she has continued doing great work as the volunteer Finance Administrator.
For some, getting pregnant happens at the drop of a hat, but due to my polycystic ovary syndrome, we needed IVF. We originally started that process just before David developed his CSF leak in 2013, but when we realised how serious David’s condition was and how long the road ahead might be, we put the IVF on hold in the hope that focusing on his health would see him get better in a year or two.
The years marched on for longer than any of us could have imagined (and despite moving heaven and earth to find that fix, it still proves elusive), but as I was approaching the age limit for IVF we decided we could wait no longer: it was now or never. To cut another rather long story short (IVF journeys are a story in themselves), we finally have some uncompromisingly positive news to share: we were delighted to announce the safe arrival of our son, Calum, on the 27 July 2020.
We were, perhaps understandably, quite nervous at the prospect of becoming parents as our lives were already very challenging with David's CSF leak. Myriad thoughts and questions came and went, not least how would we cope with a baby in the mix? But becoming parents was something that we had both wanted and, by this stage had suspected was just another one of life’s dreams to fall by the wayside, so when the opportunity presented itself and we had a very short ticking clock to work to, we decided to jump in with both feet.
David’s condition means that daily life is still very much a challenge for him and he has lost the privilege of choice across much of his life, but he can still be a parent - and a good one at that - so it seemed the right thing to do at the absolute right time.
Life is a challenge for me as well and his condition and life limitations affect us all, but there is no shortage of love and support in our family and it is wonderful to be able to share that with a new generation.
Unlike David's CSF leak journey, my IVF and pregnancy were relatively straight forward. Not entirely uneventful, but as the trimesters passed, things settled down and progressed smoothly (and just as well too, as by that time Covid-19 lockdown was in full swing and hospital visits became far less straightforward). We had hoped to have a natural home birth so that, amongst other things, David could play a full role in the process whilst being able to rest as much as he needed too, but Calum had different ideas!
In the end, after many, many hours floating in a birthing pool in our sitting room, surrounded by David, my mum, two midwives and a lot of empty Entonox bottles, I was transferred to our local hospital and continued for another few hours in the labour suite. With Calum determined not to come out the easy way, I ended up having an epidural: given what we know about epidurals and CSF leaks, I never thought I would be brave enough to risk it, however the anaesthetist was extremely careful. David found it fascinating to watch, having had over 20 epidural procedures, he could watch and explain to me what was happening every step of the way and what to expect!
And it was all worth it: we now have a beautiful, happy, healthy and very lively baby boy on our hands.
They say it takes a village to raise a child and never has that been clearer to us both. Before Calum arrived, due to David's CSF leak, I already needed help round the house and garden and to carry out jobs and duties that he can no longer do. However, now even basic tasks like getting a shower or eating lunch (never mind cooking it) are a real achievement with a small baby around. These are clearly issues for any new parents, but they are particularly acute when one of them is so disabled.
With cots, cradles and car seats to grapple with daily, babies also involve a lot of lifting, twisting and bending which gets heavier with each passing day. How is a CSF leaker meant to help with that? How on earth do women who develop a post epidural CSF leak cope? We learn more and more about what a leaker parent can and cannot do as every day passes!
Couple this with Coronavirus lock down restrictions and, in many respects, the practical side has been far more challenging than we ever imagined. I’m not sure that anything can truly prepare you for your first child arriving, but a CSF leak and a global pandemic adds extra complexity to almost every aspect.
David had already worried about missing out on parenting classes and supporting groups, but little did we know that it wouldn’t just be him missing out on them, but us both. There are no baby support groups and in Scotland we're not allowed to have visitors to our home, so getting help has been very difficult. That, of course, is paired with David’s own carers no longer being able to visit each day, and our home help being unable for most of the first lockdown period. Tough times, but we have been very lucky to have my Mum and David's parents help us, and through all of the ups and downs of the past coming on eight years we have both been blessed with truly wonderfully supportive friends and family.
And talking of family, as we get used to our new family life ahead, we're starting to look forward and think of ways that will enable David to join in some of Calum's activities away from home. David's CSF leak is so severe it prevents him leaving home unless there is somewhere on hand to lie down. He has been principally housebound for most of his thirties (he’s just ticked over into his fourties now), so his life is a permanent lockdown and his 'up' time is very limited, so we need to get creative. It's very important to me that David gets to join in as much as possible and play as full and as active a parental role as he can, both for his benefit and Calum’s. Our first goal is Calum's first weekend away at a holiday chalet in the Loch Lomond & the Trossachs National Park, then it will be Calum's first trip to the swimming pool. It adds a whole new dimension to living with a CSF leaker!
Despite all this, Calum is a very lucky wee boy. He has a Dad who can spend time with him every day and not chained to a desk in an office. A Dad who is still able to share with him his thoughts, knowledge, experience and bad jokes. A Dad who never gives up despite what life throws at him. A Dad who loves him very much. It's a privilege to share the joy of parenthood with such a Dad.
As a final word, and before I sign off, with the arrival of Calum and all of the changes that that brings, the time has come for David to step down as a trustee of the CSF Leak Association. His focus now is on being a Dad, and after almost 6 years as a founding member of the charity, the only trustee to have stayed on continually since its inception and, as chair for almost four, one of the main driving forces behind the association, it’s time for him to have a break and focus on things other than CSF leaks.
David won’t be gone entirely as he still feels a conviction to help others leakers best he can, and will still volunteer spare time to assist with certain projects behind the scenes, but as we encourage more in the community to consider joining the Board, he has earned a break…if that is indeed compatible with fatherhood!