“I didn't get much support in the hospital with my disabilities and struggled physically” - Hannah’s story

Hannah 1

Hannah shares her experience of having a baby born prematurely, as a disabled mum. Her baby boy Kohan was born at 34 weeks and is now eight months old.

Living as a disabled 24-year-old is already tough, before adding on the struggles that come with motherhood. For years I was told that I would very likely never be able to have children due to severe endometriosis and after trying to conceive for what felt like an eternity, I finally found out I was pregnant.

I suffered the worst pregnancy and just wanted it to be over. I had hyperemesis gravidarum and was sick for the whole pregnancy, with multiple hospital trips for dehydration and losing weight.

I have Hypermobile Ehlers Danlos Syndrome and multiple prolapsed spinal discs. Before pregnancy, I was able to walk a bit and then use crutches for support but while pregnant, I ended up reliant on my mobility scooter and couldn't even walk around the house without crutches.

From the start, I was classed as high risk and during the last few months of pregnancy, me and my assistance dog, Loki, were visiting the hospital two or three times a week for lack of movement, growth restriction and high blood pressure. I was diagnosed with pre-eclampsia and told I would not make it to 36 weeks.

My little miracle boy Kohan was born at 34 weeks on 20 December 2022 at Princess Royal Hospital in Telford. We say that he just wanted to see Christmas Day! I went into triage to check my blood pressure and was rushed straight up to the delivery suite with a blood pressure of 170/110.

I was put on a magnesium drip, higher blood pressure tablets and had a urinary catheter fitted. I phoned my partner who was working two hours away and said, “Get here now, he’s not going to stay inside much longer.” My partner turned up and found me lying in bed sick with Loki snuggling up to me. My dad took Loki home since she couldn't come into theatre and a few hours later I was rushed in with a blood pressure of 196/122. I was so scared that I had done something to hurt my baby.

My baby was delivered and rushed straight up to NICU before I could touch him - I only saw him wheeled past me.

I was too poorly to go and see him so my partner went without me. I was wheeled up in the hospital bed and got to this scary room with lots of incubators, beeping and sick babies. At the end of the room was my little 4lb 2oz boy, hooked up to oxygen, on a drip and with a feeding tube. He just looked so poorly and I felt so guilty!

We spent 16 days in NICU and it felt like an eternity. My partner went back to work after the first week and I was left all alone in the hospital. For the whole time I was there, I didn't step outside the hospital once. I must have walked between my son’s room and my room, down the corridor and back, 100 times a day. Due to my disabilities, I couldn't move around the hospital alone and Loki wasn't allowed to visit the NICU, so I was left without her when I needed her most.

Hannah 2

Kohan struggled with jaundice for the whole time we were in there and came home with borderline jaundice, so we had to visit the hospital for checks after discharge. He also found it hard to latch on when breastfeeding and I would express so he could be fed through his feeding tube.

I didn't want to go onto formula but I was not getting any help with breastfeeding in the hospital. I got sick for a few days and my supply dropped when I was told to miss expressing sessions to rest so I had no choice but to give him formula. When he came home, we found he had a severe tongue tie that was not noticed in hospital – it was the reason he would not latch!

We spent Christmas Day in NICU and the hospital was so good - the staff decorated the halls with Christmas trees and all the babies got a stocking hung on the end of their incubators from Santa. It made the day slightly more bearable.

My family brought us a Christmas dinner to have, with presents for my little boy, and they brought Loki in to see me. I remember dropping to the floor crying as she ran to me and it was just what I needed after the hard week. We then spent New Year’s Eve in the hospital - my partner and I stood at the window with Kohan watching the fireworks at midnight, it was so special.

I didn't get much support in the hospital with my disabilities and really struggled physically, so I spent most of my time lying in the chair next to Kohan’s bed, since walking down the corridor was too painful. I did the majority of his care, all feeding and changing, with the nurses offering to help so I could get a few hours of sleep.

My favourite time to be sat by his cot was in the middle of the night. I was the only parent in NICU at night and it was quiet, lights dim and it was when the nurses had free time to talk to me about normal life. We mainly spoke about dogs!

After 16 days, we were finally discharged and got to bring him home to meet my dog, Loki. Since the moment he came home, she has adored him!

Kohan is now eight months old and has not had it easy but is the strongest and happiest little boy! He is under specialists in respiratory, urology and dietitians (dairy allergy). This week he has finally managed to sit unassisted and has just figured out how to crawl - he is very cheeky!

Eight months later I am still being seen by the perinatal mental health team as I have severe depression and anxiety and now have PTSD from NICU. I also see an occupational therapist for my physical health and a nursery nurse for Kohan’s development. They have been great and offer me so much support, even eight months later!

I constantly feel like I am failing him and feel so guilty - that it is my fault he is constantly poorly. I have had to adapt everything I do being a disabled mom. Things like using carriers in the house to move between rooms, picking him up without using my wrists, and juggling my baby and my assistance dog while using my mobility scooter. We get a lot of judgemental looks when out in public and everyone always asks how I cope but I'd like to say I cope very well and I have a very happy baby to show for it!

We are so grateful to all the nurses and doctors in the NICU for saving my little boy so I could bring him home safely. We owe them everything!

Hannah 3