"I was half a year into my maternity leave and had not left the hospital with my baby" - Sarah's story

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At 24 weeks and four days, Sarah gave birth to her baby boy William, who spent six months in neonatal care. Now Will is at home and doing well, Sarah reflects on their journey and shares her advice to other parents.

At 23 weeks of pregnancy, I felt something changing in my body. I went into the hospital multiple times only to be sent home after getting checked over. After the third time of being sent home I started to get pain. At this point I was 24 weeks and two days pregnant.

After experiencing a dull ache most of the night, every three to five minutes, I begged maternity triage to let me come in as I was in a lot of pain. When I was eventually checked out, despite telling me it was likely a UTI or something I’d eaten, I was wheeled into a delivery room. I was utterly confused, overwhelmed but in a sense, grateful that I finally felt I was being listened to.

Then, all hell broke loose. I had multiple people running in the room, explaining I was in labour and dilated. They believed my waters had already broken and they didn’t know how long I had before I gave birth but would do everything they could to stop it.

Even though it was all quite dramatic, I was relaxed as I thought there was no chance I was actually going to give birth. I was given multiple drugs and the most painful injection of my life (magnesium) before the consultant told me they weren’t equipped to deal with babies born before 28 weeks and I would need to be transported by ambulance to a level three hospital – St George’s.

My husband called his parents and asked them to pack a hospital bag as we weren’t prepared - I wasn’t even sure what anyone needed to give birth - I planned to do all my research in my third trimester! My husband wasn’t allowed in the ambulance as multiple people had to travel with me, including a midwife ‘just in case’.

I was blue-lighted to St George’s and taken straight into a delivery room. We were met by a neonatal consultant who told us the odds of our baby surviving if born now, and if they did survive, what that meant in terms of his long term health prospects. Looking back, the numbers were terrifying but I believe my mind went into protection mode, I kept saying to everyone not to worry as I know it’s going to be fine.

A positive mindset was vital in getting me through the delivery. I kept saying there’s no point in troubling trouble, until trouble troubles you (something my mum always says).

The hospital did everything they possibly could to stop our little one coming out but he wanted to see the world and there was no stopping him. Less than 24 hours after arriving at the new hospital, I gave birth at 24 weeks and four days to a little boy called William weighing 740g.

We watched them work on him for 30 minutes where he wasn’t breathing and had to be intubated. I was fortunate enough to have a ‘birthday cuddle’ as they placed him into a towel and once he was stable, put him in my arms. He was so small we couldn’t even see him in the towel before he was whisked away into intensive care.

The hormone dump then happened and the realisation of the last three days finally hit me, I have never felt so low in my life and so hopeless than in the first few days. We were told to prepare ourselves; his lungs were so under-developed that they were like little raisins.

It was a constant fight to keep him alive. Will had two grade two brain bleeds, bleeding from his lungs and his stomach, serious burns over his lower half of his body because his skin was so underdeveloped, and his weight kept dropping. I was placed in the maternity ward with the other mothers who all had their babies with them.

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I felt so much anger towards life, towards them, to the unfairness of it all. It was so hard being there hearing their babies cry and knowing mine might not survive the night. I knew I was a mother but I was unable to do anything that made me feel like a parent. We couldn’t hold him, kiss him, change his nappy or touch his skin. His eyes were still fused shut and we weren’t sure if he could hear.

Life was just so incredibly difficult. We asked what we could do to be more involved and to build a bond with our son. We changed his nappies when we were allowed, we put him in containment holds and we read him stories.

Practically living in the neonatal unit took its toll. It was mentally and physically exhausting - it was a very large unit and there were so many sick babies. The crash alarm would go off multiple times a day and every parent would run back to their baby’s cot and pray it wasn’t their child, then have the guilt knowing it was someone else’s.

Will was quite unstable and had the crash alarm pulled for him on several occasions. I will never experience fear and pain quite like those moments standing there watching a large team working on him. It brings tears to my eyes thinking about those terrible moments again.

On a more positive note, the days weren’t all so bad. The other parents we met during our stay made life seem a little more bearable as everyone in there is going through the worst moments of their lives and it helped to talk, rant, cry and occasionally laugh. I know I have been lucky to make some lifelong friends.

At this point in Will’s care we became research addicts, googling every medical term and diagnosis. Most research did help us build knowledge and understanding of what the doctors were telling us, however in equal measures it brought panic and worsened our worries. Bliss is a great resource that has accurate information!

After seven weeks in intensive care Will moved into high dependency and we were told his brain bleeds had started to resolve. We could finally see some light at the end of the tunnel and for the first time since he was born we thought he may live - this was one of the best feelings I have ever felt: hope. This was solely due to the incredible lifesaving care he received at St George’s Hospital and we will never be able to truly express how grateful we are to them.

In week nine we were moved back to our local hospital – Kingston. I thought we were on the home stretch.

Will was still incredibly fragile and the doctors liked to call him ‘sensitive’ as he seemed to have numerous profound desaturations for a multitude of reasons. His oxygen would often drop to the 20s/30s/40s - he was constantly being ‘bagged’ where they would have to manually breathe for him and he had the crash alarm pulled a few times at the local hospital, even though I thought it should have been getting better.

William had Grade Three ROP (Retinopathy of Prematurity) and needed to be transferred back to have laser surgery to save his eyesight. However he was very sick at this point and kept needing to be resuscitated so was too unwell to travel.

There was a chance he could lose his eyesight, but luckily his eyes stabilised over that weekend and he started to get better. The high we felt when we were told he may not need to be transferred back was amazing.

Kingston neonatal unit was incredible and I had made friends with the staff but five months in, I was starting to get sick of being in hospital. We made friends with parents who had come and gone. I found it exhausting telling my story. I felt like I was giving a piece of myself to each of them and then they would move on, but I would be in the same spot by the window week after week.

Will had a lot of issues with feeding, he couldn’t quite manage the suck, swallow, breath response and had severe reflux where he would often stop breathing.

At this point in his care he had spent his entire life being fed through a tube in his tummy but it became so bad that he had to be fed through a tube going into his intestines. He was also transferred back to St George’s Hospital to be put under general anaesthetic and have a camera put into his airway to find out why he wasn’t feeding well and search for a reason for his desaturations.

They found multiple cysts in Will’s trachea and mild tracheomalacia which they suspected were getting worse every time he fed - they believe this was because he was intubated for quite a long time. There was nothing they could do for him and it would just be something he would grow out of but they couldn’t estimate how long this would take, which was incredibly frustrating.

In the sixth month, William was finally allowed to feed like a normal baby. He was given a bottle and I have never seen a baby demolish milk like him. We had been at Kingston Hospital for four months now and I had spent every day of it there which meant I was part of the furniture!

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I knew all the nurses and doctors by name and would participate in rounds every morning. I kept pushing to get us home as I was half a year into my maternity leave and had not left the hospital with my baby.

A lot of doctors discussed Will and they agreed we could take him home under strict medical direction. He was still having daily profound desaturations and feeding issues but was coping so much better with them and we felt confident in our ability to care for him.

After six months it was hard leaving the hospital. I felt I was institutionalised. I had spent a minimum of 12 hours there every day, sometimes not leaving the hospital for days on end and it was all I knew of being a parent. But the feeling of carrying our child out of hospital was the best feeling I will ever know. My husband and I both cried the whole way home (happy tears).

I was told that he would be unsettled coming home because he would have been used to the bings and bongs of hospital machinery but he has been wonderful. He can sleep in silence and equally can sleep in incredibly noisy rooms! We found it helpful to get a white noise machine we could leave with Will at the hospital and when we could finally take him home it gave him some consistency with the change of noises.

Will is doing so well. He has a million and one medical appointments but has put on so much weight. He finally has rolls!

At eight months old, Will is still wearing 0-3 month clothes and the look on strangers' faces when they ask how old my newborn baby is, will forever make me laugh. There is still this question mark that will hang over us as we begin to discover if there are any lifelong issues we may face. We are cautiously watching the milestone markers every month, but the most important thing we are doing is enjoying our time with our little boy. He is a miracle.

I am so grateful for our journey so far because we have our little boy home with us, and it makes us even more thankful for every screaming fit and sleepless night. Life could have been very different for us. I wouldn’t change a single thing.

My advice to parents:

In the early days it’s about survival - not just for your baby but you as parents. Do what you need to do to survive: cry, scream, sit in silence, whatever it takes.

Remember to take many pictures and videos, read lots of books, and hold their tiny, little hands as you will treasure these moments later on.

In the first few weeks, you won’t know if you are coming or going but after some time you will start to know what’s normal for your baby and what isn’t. Listen to your instinct and be the advocate they need you to be.

The doctors and nurses are incredible but this may be the first time they have looked after your child. You will know what’s a normal cry, a normal colour, a normal cough, a normal bowel movement! If something doesn’t feel right – say something!

Make friends with the other parents. You are all going through your own hell but you don’t need to be alone.

Research is both a blessing and a curse. Please read only trusted websites and find what works best for you.

Take breaks. Have a drink, go out for dinner and try to get enough sleep. Please look after yourself - you feel guilty for leaving your little one but remember you can’t pour from an empty cup.

Try and get a routine. There will be so many changes - room changes, hospital changes - in each one find a routine in the chaos that works for you. Change is unsettling and scary, give yourself a break, be okay in the uncertainty of it all.

‘Parenting’ can feel few and far between. Try to do ‘normal’ parent things when you can - bathe them, play with them, fill their corner with an abundance of toys.

Read, watch films, knit, find something to pass the time whilst you are there.

Remember this isn’t forever (even though it probably feels like it is). You are going to survive this.