Baby Noah, our spina bifida warrior ️

Hello everyone

It breaks my heart to reach out in this way.

As some of you may know on 05/04/2024 my 18 year old niece Courtney gave birth to her first baby, a boy named Noah Kenneth Steven Williams at 25 week + 4 days weighing 1lb7oz. However, due to severe medical complications he was too precious for this earth and was born sleeping

She found out at 20 weeks Noah had club feet and possible problems with his spine was referred to fetal medicine at RVI where she was scanned and told he had spina bifida from the lumbar region down (bottom of rib cage on his spine down) Where told he would be paralysed waist down. He would unlikely walk, possibly will have problems with sitting up, but there was hope.

We knew he was going to be disabled with complex needs and more than likely in a wheelchair for the rest of his life. We were given hope he’d still live a happy good quality of life, with some extra care needed. As a family we were shocked, but also prepared and more than overjoyed. We couldn’t wait to have our little special boy come into the world who maybe might’ve just fought against all the odds. He immediately became our little spina bifida warrior boy ️ who we could not wait to meet and join our family.

Courtney (mam) had to wait 3 long agonising weeks for the next available MRI. Where things could be seen a bit clearer. In between this she was seen again by a neurologist who told her from the sonogram photos it’s not as bad as they think; there was a possibility Noah would walk, with aids and everything seemed to be going great! Courtney and Steven were over the moon. We all were. Best news ever!

Unfortunately later on than we could imagine in her 2nd; near on 3rd trimester they found out from the MRI results, Noah had one of the worst case of spina bifida the consultants had ever seen. He had caudal regression syndrome which is a rare congenital abnormality in which a segment of the spine and spinal cord fails to develop. Alongside a lot more severe medical conditions. Meaning he wouldn’t make it past childbirth and if he did his quality of life would be devastating.

After an amazing gender reveal, all the excitement, all of our dreams were shattered with the news. This has truly devastated Noah’s mam and dad Courtney & Steven as it would any parent. They were so excited and ready to be parents to their precious baby boy but heaven had other ideas and that was ripped away from them before they could even start.

Although he was stillborn, he was still born and if love alone could have saved him he would have lived for eternity ♾️

I know times are very difficult at the moment for everyone financially, but we are asking for anything to help us through this difficult time. So we can give baby Noah the little send off he deserves.

Originally Courtney wanted to have Noah burried with her dad or his ashes scattered over him. However the owner of the plot will not allow this.

Courtney has now decided she would like to have him cremated and scatter his ashes on the coast where she grew up near her Nana Louise, and where he would of been a lot of his childhood at the beach. She would love to have help towards buying Noah his own bench to sit on remember him by.

This is the average price they are looking at

As a family and on behalf of Courtney Steven, and baby Noah we thank you for your consideration

To our precious boy Noah We will love you forever, we hold you in our hearts until we can hold you again in heaven. Our sweet tiny angel our arms will ache to hold you every day that goes by. So small, so sweet, so soon. Go be free now with your Grandad Kenneth, Grandad Steven and your uncle Joe in heaven

A poem from Noah to his Mam and Dad, Courtney and Steven:

Sweet little butterfly

“I lived my life inside you

Cocooned in all your love

So mama, papa, please don't cry

I'm still with you, just up above

I felt your every heartbeat

It's my sweetest melody
And for every heavenly bedtime

The Angels play it back to me I know how much that I am wanted
I feel so very blessed

Of all the mamas, papas in all the world
I got the very best!

You think of me in all your waking hours,
And on those sleepless nights

Just look out the window and you'll find me

The brightest star, the most dazzling light I'm that little breeze in the summer

And I'm that unexpected white feather
I plucked it from my downy wings

So that you remember we are always together

I know how much It hurt your soul

When we had to say goodbye

But I'm not gone, in always here
Im your sweet little butterfly.”