In loving memory of baby Reuben

Baby Reuben's Story

As some are aware, our little boy Reuben was born sleeping (stillborn) on 14/12/21. Our pregnancy wasn’t the easiest, but we continued to fight on for our little soldier. We were 24 weeks pregnant with Reuben, he weighed 1lb 4oz and was so perfect in every way.

We first discovered problems in our pregnancy at 16 weeks, Reuben’s kidneys were moderately dilated, they turned severe around 23 weeks. We discovered he had a cleft lip and palate at our 20-week scan. Our consultant advised us to have an amniocentesis due to these problems. If only we knew what was to come. We found out Reuben had 2 rare genetic disorders, NF2 and MN1. Both we had never heard of. NF2 currently has no cure and affects approximately 1 in 35,000 children and adults globally. NF2 causes tumours to grow throughout the nervous system, mainly affecting his brain, spine, organs and limbs. MN1 causes learning disabilities and Reuben also risked being deaf and blind due to the NF2, these are just a few of the horrific problems he faced.

We didn’t get the opportunity to spend any time with our son alive, his heart had stopped beating well before birth. This made things even more unbearable. The hopes and dreams we had of our life with him and his sisters had all come crashing down on us.

We would love to give something back to TWO brilliant charities.

The only blessing which came of this was the support, care and compassion shown by the brilliant Honeysuckle Team at the Liverpool Women’s Hospital (where our son was born). The Honeysuckle Team support bereaved parents.

The Honeysuckle team allowed us to create beautiful memories with our son, which is the only thing we have left now. We created his foot and handprints and they organised a blessing for Reuben. They allowed us to spend as much time with him as needed and provided a cold cot so that he wasn’t taken away from us. We had so many cuddles together, they dressed him for us as we were too scared of hurting him. They provided a memory box with beautiful keepsakes and gifts in, which we keep in a special place in our home. They contacted a funeral director and made the initial arrangements for us – something no parents should ever have to do for their child.

The family room within the hospital was as lovely as can be. Having this place for bereaved parents to visit their sleeping angel really helped us. It meant that we could go home, freshen up and come back to the hospital to spend as much time with our son as we needed. The room was calm and relaxing, with soft music playing, sofas, a moses basket and a kitchen area, so you felt quite at home. There was only one room within the hospital, so only one family at a time could visit their sleeping angel – we were lucky and were never turned away.

The other charity we would love to fundraise for is Nerve Tumours UK. When we first knew about Reuben’s diagnosis, we reached out to this charity for further knowledge and advice for ways we could make Reuben’s life more pain free. Nerve Tumours UK provided us with so much support and put us in contact with a leading specialist NF2 nurse and genetic consultant in NF2 who spent many hours on the phone and video consultations. At present there is no cure for this terrible disease, so support from this charity is crucial for those living with this condition.

We would love to give something back to both these incredible charities by raising money for whatever they need. Whether this be more cold cots for sleeping babies, upgraded equipment or to help provide another room for families to cherish the last moments together with their child. Whether it be Nerve Tumours UK hosting patient days, being able to answer many more phone calls to patients and families affected by NF2 or helping to find a CURE. We really appreciate every little thing that was done for us during our heart-breaking time. We simply can’t thank them enough.

Now that I am 6 weeks post-partum, we will be walking 24 miles per week whatever the weather – 24 miles as Reuben was born at 24 weeks gestation. What better way to raise money for an amazing cause and combat our mental health! We will be doing this each week until Reuben’s due date 2nd April 2022.

So that’s 216 miles we will be walking in honour of our beautiful son. Any donations would be very much appreciated. Let’s support many more bereaved families like ourselves.

Thank you,

Sian & Connor (Reuben's mummy and daddy) x