Today Renal Agenesis UK has been an organisation for 5 years, what started as a Facebook group and a website has grown into a registered baby loss charity providing information and support to parents and families of babies who have been diagnosed with the condition Bilateral Renal Agenesis.
Today is also the 10th birthday of my son Jacob who was born silently into the world on the 11th January 2014 after a diagnosis of Bilateral Renal Agenesis.
The shock and devastation at being given the information that our loved and longed-for baby had not developed any kidneys was unfathomable. Our whole world was shaken to its core by something we had never heard of.
20-Week Scan
We had gone to our 20-week scan a little anxious because we wanted our baby to be ok but more excited to find out if they were a boy or a girl. No one ever expects bad news at a 20-week scan, there is an expectation that once you are past the dreaded 12 weeks everything is going to be ok. But those of us who have been plunged into the world of baby loss, sadly know differently.
The lack of information about the condition was stark. The internet has some fact sheets which all said that the condition was fatal because there were no kidneys and therefore no amniotic fluid, but there was no reasoning or further explanation as to why the kidneys or amniotic fluid were so important during pregnancy. And there was no mention of Pulmonary Hypoplasia
The loss of my baby shattered me, a darkness settled over my heart and soul which has never really left. I struggled to understand why there was not more information, more detailed information because it felt like there was just an acceptance, no kidneys = fatal condition. But the decision to terminate our baby’s pregnancy was too huge a decision to not have more information.
It felt like there was no information because there were no treatment options, nothing which could be done for babies diagnosed with Bilateral Renal Agenesis.
Termination For Medical Reasons
My husband and I decided to have a termination for medical reasons, we made the decision based on the medical advice we had been given and for our own personal reasons. Please believe me when I say that the decision I wanted to make was to not have to decide at all, to not be in this situation and to have my baby healthy and happy inside me. But that’s not the situation we found ourselves in.
I was a nurse during this time and I couldn’t understand why our fetal medicine consultants weren’t discussing kidney transplants and options for keeping our baby safe until he was born. I struggled to understand why there was no viable treatment option for my child but I also didn’t understand the condition.
I don’t think we ever heard the words ‘Bilateral Renal Agenesis’, we were given things like ‘Baby has no kidneys’, and ‘There’s no fluid around baby’, but I was a nurse, not a midwife so I had no idea how all these things related together. I was also grief-stricken, not that I knew it yet, to fully understand the connection between it all.
I needed our medical team to spoon-feed it to me but that didn’t happen. I also didn’t have any living children so had no experience of pregnancy at 20 weeks.
A Grief Bubble
After he was born, everybody fell away. We had family trying to support us but dealing with their own grief. We had friends try as hard as they could to understand what we were going through, but we were in this grief bubble. Only the 2 of us knew what we had gone through, he was our son, our flesh and blood and my husband was the only other person in the world who knew what it felt like to lose him.
I wanted to speak to someone who had lost their baby to the same condition, to someone who had had to go through what I had had to go through, but it was 6 weeks after Jacob was born before I found out about ARC (Antenatal Results and Choices) from a work colleague.
I didn’t contact any other baby loss charities because I didn’t think they would want to support someone like me, someone who had had a termination for medical reasons because I had done this, I had had to decide therefore this was my fault and baby loss charities supported people who lost their baby through no fault of their own. Something which wasn’t true but that was my process of thinking at the time.
There was no follow-up from the hospital except for my 6-week check-up, and there was no follow-up from my community midwife, we had been abandoned in the wilderness of baby loss and grief.
At a time when we should have been guided to support instead, we were told to ‘google it.’ At a time when we could barely comprehend what had just happened to us and the death of our child, we were expected to be able to know where to look for help and support.
ARC, Held In Our Hearts
Thanks to ARC, Held in our Hearts (previously Sands Lothians) and other baby loss charities we rebuilt ourselves, we learned to live with our grief and honour our son in ways which meant something to us.
We have built a life which includes him, something I don’t think either of us could envisage at the time. The dark, heavy days of being newly bereaved have softened into an acceptance of what happened. There are still tears, there are still heavy days, but they are infrequent.
That doesn’t mean that we love our son any less, it just means that we bring him along with us, we keep his memory alive because we love him and he will always be our firstborn, he will always be our child and he is forever woven into the fabric of our family.
It seems inconceivable that in 2024 bereaved parents would be advised to google support but sadly it still happens. At a time when we need to be led by the hand, guided, and supported there is still a lack of understanding and empathy when it comes to post-baby loss health and wellbeing.
Renal Agenesis UK
And that is one of the reasons Renal Agenesis UK was born.
Renal Agenesis UK started because I was a bereaved mummy who desperately wanted more information about my son’s condition, a condition that robbed him of his life and robbed us as a family.
It started because the thought of another mummy or daddy feeling abandoned because of a lack of information about the condition made my heart sore.
It started because it felt like there was a need for it, a space for it nestled amongst other baby loss charities.
Renal Agenesis UK has grown slowly over the last 5 years but we grow and we hope to support as many people as we can who have been touched by a diagnosis of Bilateral Renal Agenesis.
We have grown from a Facebook page and website to a monthly blog, a monthly newsletter, an online support group, 2 information leaflets being delivered to hospitals free of charge, to a team of 8 volunteers who dedicate their time and experience to driving the charity forward.
And to the little boy who inspired it all, we say happy birthday…
‘And ever has it been known that love knows not its own depth until the hour of separation’ – Khalil Gibran
