We are continuously looking for ways to increase Renal Agenesis UK profile so that parents and families have information about Bilateral Renal Agenesis as early after diagnosis as possible. These are dark days, and many may struggle to search the internet for the right answers.
Our aim has always been to provide support and information to anyone who needs it. This is why we try to contact as many hospitals as we can to let them know that we exist and that we are here to help in any way we can.
The Royal College of Midwives Conference
The idea of attending a large event such as a conference wasn’t on our radar until one January day when we were looking at ways to better increase our contacts with midwives. An advert for the RCM conference had appeared on our social media accounts and the thought grew from there.
After gathering some information about costs (who knew attending a conference could be so expensive!) it was put to the Renal Agenesis UK board. Should we attend this event? And thankfully, it was a resounding ‘Yes’! What better way to speak to thousands of midwives in such a short space of time? We could speak to more in a day and a half than what we have managed over the phone in the last 5 years!
As an incredibly small charity, this was going to be a huge amount of money to be spending but isn’t this the type of event we had been saving for without realising it?
So, we took the plunge and spent nearly every penny we had on this one opportunity.
We had one aim, to speak to as many midwives as possible and give out as many of our information and parent information leaflets as we could!
Midwives are amazing people who look after us through our entire pregnancy, but they are also the ones holding our hands as we receive the devasting news that our baby is sick and might die. They are the ones who are there at diagnosis, birth and beyond.
The conference itself was huge, it was a scale we never expected, and we were ironically next to the CuddleCot stand.
Sharing Renal Agenesis with midwives
The next day and a half were spent speaking to so many lovely midwives. They all listened to our story of how the charity came to be, they asked us about our little boys who had died from the condition, and they took away our information leaflets back to their respective units.
Many of them told us that bereaved parents looked to them to provide information during the difficult days after diagnosis and they don’t always have that information at their fingertips. They said knowing about Renal Agenesis UK and being able to signpost parents to our website would be another step in supporting bereaved parents as they begin this journey.
Student Midwives
We, naively, thought we would only be speaking to midwives who worked in the maternity departments or within fetal medicine departments, but we were delighted to meet a number of student midwives too.
They were so keen to know more about Bilateral Renal Agenesis, asking lots of questions about the condition, about the kidneys and pulmonary hypoplasia. They soaked up as much information as they could, relaying it to their fellow students that evening who appeared at our stall the following day with their own queries and questions.
Midwife Lecturers
We met midwife lecturers from universities and hospitals, who asked if we would be willing to speak to their students. This wonderful request caught us off guard, it was something we had never expected nor one we had thought about for ourselves. There are so many amazing baby loss charities speaking to students already we hadn’t expected to be asked.
We were delighted to accept and thanks to virtual meeting spaces, we can tap into a lecture without leaving home.
This opportunity is another way to raise awareness of Bilateral Renal Agenesis and the life after the loss of a much loved and wanted baby.
Education is so important when supporting someone through the first raw, dark days of baby loss because that bereaved parent will remember the kindest words said to them and the most hurtful or indifferent words said to them.
Maternity-Related Companies
We met people from maternity-related companies, many stopped as they walked past our stall and asked us who we were. Once they had stopped, they were there for a while, listening intently to our stories, asking the names of our babies with some even shedding a tear after hearing of our journeys. They showed kindness and compassion to complete strangers while trying to understand our loss.
We connected with other charities and spoke of the work each does in raising awareness of baby loss, terminations for medical reasons (TFMR) and the challenges that face baby loss charities.
The response to Renal Agenesis UK was overwhelming, emotional and inspiring.
The journey to this point felt worth it, attending this conference far surpassed our expectations and our ambitions.
No parent should ever feel alone at a time of diagnosis, no parent should ever feel like they are the only ones experiencing the devastation and trauma of being told that their much loved and wanted baby has Bilateral Renal Agenesis and is going to die because of this condition.
Therefore, we want to meet as many midwives as we can to raise awareness of Bilateral Renal Agenesis and Renal Agenesis UK!
And with that in mind, we are setting our sights on next year’s Royal College of Midwives Conference in Birmingham.
Any and all donations or fundraising will help us in our goal of getting there so anyone fancy doing a bungee jump for us?!?!
