My name is Nina Jane West, I live on the Isle of Wight and in January 2018 I lost my daughter after a very turbulent pregnancy. I am on a mission to raise money to buy the Princess Anne Hospital in Southampton another Cuddle Cot (read story below to see why I am so passionate about this).
In memory of Mae and all angels that will be forever young.
Read my full story here…
This year will be my 30th birthday. I wanted to climb a mountain before being 30 and I was due to do Base Camp Everest in Feb 2018 but on the 7th of June 2017, I found out I was pregnant with my first baby, I was absolutely over the moon and couldn’t wait to love, hold, kiss and teach my first born all the things I know! Having a baby was much more of an achievement than climbing a mountain!!
I was now a mama.
I had a scan at 10 weeks as I’d had a sickness bug and pains so they booked me in to check all was as it should be and from what they could see, it was. Naturally, I cried the first time I saw my baby on the screen! What a feeling. I announced my pregnancy to friends and family and everyone was so overjoyed for me, telling me what an amazing mama I’ll be.
It’s routine to have a scan between 12-14 weeks so I went along with my mum and sister. Only one person was allowed in with me so my sister came in. I hopped up on the bed with big nervous/excited smiles and the midwife popped the gel on my tummy and started scanning. She stopped and told me if I need the loo that I could go. I was busting, so off I went. When I came back into the room she said ‘actually your mum can come in too’ and that’s when it twigged that something might not be okay.
The midwife started scanning again and I remember fighting back tears and asking ‘is everything okay?’ She said something along the lines of ‘I’m afraid it doesn’t look good’.
I found out my baby had fluid under the skin – this made no sense to me.
I was sent over to Southampton the next day to be told that the fluid was around the head, chest and abdomen. My baby had a cystic hygroma and ascites (fluid on abdomen). Doctors thought it would be a chromosome/genetic diagnosis so I had all tests to try and find this out what was causing it but to the doctors surprise, they came back clear.
I was told to ‘expect the worst’ because the fluid was bad and I had a ‘very poorly baby’.
I then had to wait 4 weeks for a 16 week scan to see if, over time the fluid had worsened or improved or if there was even a heartbeat. I had my 16 week scan on the Isle of Wight and I was told the fluid was still there.
I wanted to know the sex of my baby because I was so scared I’d lose them at any time. I found out that my baby was a little girl.
Her poor tiny little skull was surrounded by fluid under the skin, she looked like she had a halo. Her tiny organs amongst her swollen abdomen, was full of fluid. They diagnosed Mae with Hydrops Fetalis. Hydrops develops when too much fluid leaves the bloodstream and goes into the tissues. Many different diseases and complications can cause hydrops. A condition that does not have a good prognosis.
I was told ‘over the next few weeks, we believe the baby will demise’. I didn’t understand the meaning of ‘demise’ until it was said it for the 10th time. I couldn’t quite take in what I was hearing and me and my mum went back to the car and cried, got angry, cried some more and sat in silence disbelief.
I named my daughter Mae Anela Billy.
Mae because she was conceived in May.
Anela is Hawaiian for Angel and Billy after my late Papa.
I heard Mae’s heartbeat two weeks later which was amazing but had to wait another 4 weeks for a scan. I had to go to Southampton for the scan and it was decided we would have a procedure where they drain the fluid with a big needle. They went through my tummy and into Mae’s tummy. They assured me that Mae couldn’t yet feel pain. This was the relieve the pressure and give Mae’s lungs some space to grow. As time went on the fluid kept returning so we kept draining and eventually the pressure eased up. The feral and medicine staff at the Princess Anna hospital respected and supported my wishes of doing everything I could for my Mae and we did.
I even had a procedure where they tried to fit a canula using a much wider needle (during this, we could see Mae’s fingers and she looked like she was trying to grab the needle). The canula failed but the fluid didn’t return, as much.
My baby was still diagnosed with Hydrops Fetalis and with no known cause had a 50/50 chance at surviving. They literally could not tell me what would happen when she was born. A neonatal nurse that had experience with Hydrops did prepare me for the worse and told me they wouldn’t work on her if it is clear she is too poorly and that is what we agreed. I did not want my baby to suffer.
By the time I was 33 weeks I was told I would be booked in for a cesarean around 36-37 weeks so I anxiously awaited this. I was given a date my daughter would be born. Monday the 15th January. I had one more appointment in Southampton on the Thursday before to take bloods and be given some steroids for Mae’s lungs etc
My Mae had other ideas and wanted to do what she wanted (like her Mama), she did not want to wait until the 15th of January.
On the 13th January at 3pm, I went to my local hospital with what I thought was ‘braxton hicks’ and at 5.30pm I was told I was in fact 1cm dilated.
Before I knew it, I was being transferred to Southampton by ambulance on the the 7.30pm car ferry. I arrived at the Princess Anne Hospital around 8.45pm and by 9.30pm I was told I was 3cm dilated.
I was in theatre having an emergency cesarean by 10.30pm & Mae was born at 10.50pm.
The neonatal nurses told me that because of Mae’s hydrops, her skin was loose & her tummy/ribs hadn’t formed properly. Mae had lots of complications & putting Mae onto machines would not help her.
We were told the dreaded words of ‘it would be best to just have time’.
I had done my research on Hydrops Fetalis so I kept the outcome we’d been given in mind throughout my whole pregnancy.
However prepared you are, still does not prepare you for the pain. The pain of giving birth to such a beautiful little human, your beautiful little human. Then the pain of losing your first child at just 1 hour & 57 minutes old.
Mae did not have a normal breathing pattern and her dear little heart was getting weaker every moment but the fact she was breathing alone & making little cries was a miracle itself. My mumma was my birthing partner and was in the theatre with me the whole time and then Mae’s father Josh, joined us (Holly knew that if they got Josh, things were not okay. This was always the plan, so you can imagine the atmosphere in the waiting room).
They sewed me up and took me to room 7 where we decided to bath my Mae (she pooped on her way out – I heard the nurses saying what I thought was ‘blood change’ but they were actually saying ‘glove change’ because Mae had pooped everywhere).
To see the extent of Mae’s tummy and her chest rising and falling was so hard but it put into perspective just how poorly my angel baby was.
Mae was not in any pain, I believe she wanted these moments, we bathed her, she opened her eyes twice, we got her dressed into one of my favourite outfits and we all had a cuddle with her. There were 11 of us.
I was holding Mae when she went peacefully with the angels at 12.47am on the 14th of January 2018.
My baby survived 1 hour and 57 minutes.
We didn’t sleep all night, we just held her.
The nurses bought in a cuddle cot for me to put Mae into. Cuddle cots keep your baby cool to allow time with your baby. Time allows the family to form an important bond with their baby; whether changing a nappy, dressing the baby, taking photographs or simply staying close and this helps families in dealing with their loss.
However horrific this sounds, it gave me time with my daughter. The next few days were an absolute blur but I am so very grateful we had the cuddle cot to have time with my girl. We left the hospital on the 16th of January. I had Sunday, Monday and Tuesday morning with my baby and that’s thanks to the Cuddle cot.
My mission here is to raise enough money for another Cuddle cot for the Princess Anne hospital in Southampton.
I plan to walk from Ryde to Ventnor, Isle of Wight on Saturday the 18th August (my 30th birthday would have been two days before so it is also for that). With friends and family and whoever else wants to join!
If you would like to join us, all I’m asking is that you donate a quid for a crib! (If you can afford more, please don’t hold back) and come along!
Losing a baby is horrendous (there are no words bad enough for it), let alone your baby being taken away right after birth. There are so many women I have spoken to that have told me they didn’t have this time with their babies.
Time is so important. Let’s make it happen.
I started a saying ‘we got this Mae’ and it carried on the whole way through my pregnancy and my girl really did own it. Mae gave me the strength to believe me and her were invincible and for that I am so grateful. #wegotthismae
Feel free to follow my insta @njdoubleyou for my day to day life!