Autumn's Journey So Far

Autumn's journey so far,

With no prior warning of Autumn's condition throughout the pregnancy and her small size being linked to my wife's gestational diabetes we were excited for our planned C-section on the 10/10/23 in Worcester royal hospital.

Unfortunately the c section had complications as Autumn was not breathing. After what felt like forever while trying to comfort my wife they got her breathing and rushed her to the neonatal intensive care ward.

My wife was recovering while I got to meet Autumn for the first time, For my wife her experience was harder as her first time meeting Autumn did not go smoothly as Autumn had a seizure and had to be treated by multiple nurses. Once the seizures were under control my wife had the chance to see Autumn and spend some quality time with her.

It was at this point that a consultant wanted to do some tests as they noticed some possible traits that can commonly be seen in Edwards syndrome children. While waiting for the results the physical strain impacted my wife with the forced recovery to see Autumn as much as possible as she got an infection and we were split up between the NICU ward, postnatal, the family accommodation onsite to facilitate parents in our position and home where our other daughter Robyn was.

As time passed we received the results and were not informed it was Edwards syndrome with additional heart conditions consisting of a large hole in the heart and 3 defective valves, this meant that if anyone wanted to meet her they were to come and visit as they did not know how long she would stay stable on the CPAP machine for. Soon after the diagnosis we were asked to fill out the do not resuscitate forms in case she became unstable a process that has since been adapted to ensure that in future the timing of delivering this sensitive paperwork is delayed to allow parents time to process the situation.

We had family and friends meet her before we were informed that we needed to let the team know when we wanted to remove the support equipment.
As parents we felt this was something we could never do until we started to notice a natural decline in her condition. With a heavy heart we felt she was telling us that she was tired.

After my wife said her goodbyes i felt that as a father I needed to stay with her so she was not alone and wanted her to know that we loved her so much, hours later she was still doing better without the respiratory support  which resulted in adapting her feeds from comfort feeds to increased feeds so she could gain weight, and discussions about next steps.

After a couple of weeks we were given the option of a hospice which we declined as this would have resulted in Robyn moving school and we felt that she needed her friends as she processed her little sister's condition.

We then had the pleasure of meeting the Orchard community team and were informed that things could be put in place for us to go home and care for Autumn there.

While at first we were unsure as we wanted to protect Robyn from experiencing anything bad happening at home we realised that she needed her little sister and Autumn needed her.

Within 48hrs Orchard had put in place everything we needed to cover her NG feeds and at home care which was nothing but amazing.

This resulted in us completing our training to do NG feeds, and all other aspects of Autumn's care.

Fast forward months to a situation where she continued to thrive at home, had numerous appointments with the consultants at Worcester and the Birmingham children's hospital who looked past her on paper diagnosis and quickly adapted to making all options available to make her life as comfortable as possible as her journey continued.

We have had the opportunity for family days out and even managed to get a family holiday in Paignton with the help of the charity THHN memory makers.

Everyone that has met her has fallen in love with her and she has become a little celebrity in the hospital with the staff always wanting updates on how she is doing, also being in a position where consultants are booking in appointments months in advance as she is doing so well.

Because of this we decided to make some jewellery pendants for family and friends so they could all have a little something to keep Autumn close to their hearts. This started with us making 30 which sold out in less than 24hrs.

We started making more along with a range of bracelets and earring sets that we called the autumn leaf.

This escalated to having now sold more than 300 items and doing our first craft fair on Saturday 20/7/24 where we also sold one of a kind jewellery sets raising a further £400.

We are now in a position where we are looking at more craft fairs as our current fundraising has raised £1400.

At the craft fair we were approached by the local paper to highlight what we were doing and I was interviewed by the paper this evening with our story and our fundraising.

Because this has become bigger than we have ever imagined I have created a fundraising page through JustGiving as the newspaper wishes to include this in their article so hopefully more people can donate.

To be the husband of such an amazing wife and the father of a kind, considerate and compassionate daughter Robyn (8) who wants to get into nursing to help people like autumn and a wonderful warrior daughter Autumn defying the diagnosis and continuing to get stronger I could not be a prouder father.

Hopefully the poem I wrote for Autumn below shows how we have felt going through this journey that each moment is special no matter how long, we have all been impacted and that we are human and when things get hard it is ok to reach out for support so we can heal, remember, embrace and understand that at SOFT UK help is there and you will always make time to help any family on their journey.

Our journey with Edwards syndrome has made us realise that no matter how much time we have with our children they are always loved and no one can take that away

Autumn's poem:

Strength that cannot be measured encasing you in armour that keeps you safe but weakens ours,

A hearts holes that are healed with all the love we give you all the time leaving us with a hole in our own,

A determination that reaches past the stars filling the empty space with joy and a reason to be full of pride,

Each part of you is more special than the last,
You are more than just a season that brightens our days before the harsh cold of reality sets in,

You are an inspiration and beauty that blesses each moment we see you,

A light that never fades no matter how dark it becomes,

A beacon of all the good things this world has to offer and hope to persevere through any bad things that cross our path.

Your story an honour to be part of, each chapter more captivating than the last.

Thank you for being the reason we smile, cry, embrace and endure everything together always and forever.