I am so thrilled to bring you another Time to Talk NICU Guest blog, and this time from the lovely Emily Whalley of Fox & Moon Infant Sleep (@foxandmooninfantsleep). Emily welcomed her second child, Henry, at 31 weeks gestation. This was unexpected as Emily went to 42 weeks with her first child. Thank you Emily for sharing your personal NICU experience with us. I know that it wasn’t easy for Emily to share, but that she was determined to do so, and for that, I am truly grateful.
I woke up at around 4am that Thursday morning. The bed felt wet and because of the dark of the night, I automatically assumed it was blood that I was lying in. It was not until I turned on the light that I realized my waters had gone.
I was 31 weeks pregnant; my Husband had literally just opened our front door after returning from a night shift and my 3-year-old son was tucked up in bed. He had arrived 2 weeks overdue, 4 years previously, so never in my wildest dreams did I expect to have my 2nd son, Henry, early. My local maternity unit told me to head down to them immediately, so we woke my youngest son, dropped him at my Mum’s and made our way there.
After two nights in hospital, some steroid injections and some toing and froing between consultants, I was discharged from hospital with a 10-day course of antibiotics with strict instructions to come straight back if contractions intensified. A scan was booked for a few days later to check the water level around Henry.
It was not until I turned on the light that I realized my waters had gone.Emily Whalley @foxandthemooninfantsleep
At 2am the following morning, I awoke with quite intense contractions, so I headed back to hospital where I was placed on a magnesium sulphate drip to help prevent cerebral palsy. It was around that time too that I was scanned and we were told that Henry was breach and that I would be given a c-section as soon as I was in established labour, because of henry’s position in my womb, there was a high risk of umbilical cord prolapse.
I was put on bed rest and told that I would stay in hospital until he decided he was going to come, that might be in the next few hours or the next few weeks. My heart broke at that news, I missed my other son so much it physically hurt me.
Two nights later my contractions intensified, a pattern that seemed to be happening only at night. They were particularly bad, and I asked my husband to call me so that he could talk me through them and be some support. They slowed down again, and I fell asleep, waking just a few minutes later to a big painful contraction. A few hours later I was taken down to delivery where I asked to be examined but due to the risk of infection, they said they would rather wait to see what my contractions did.
The obstetrics team that had been assigned to me were in surgery and I was told that they were waiting for them to come out to examine me, and as soon as I was 4cm dilated I would be taken into theatre for the section. I just knew that I was already way past that, I knew that Henry was coming.
I begged them to check me until by chance, my obstetrician was leaving theatre and heard me wailing, she came in and checked me and I was 10cm dilated and they could feel Henry’s bottom. I was then rushed to theatre, which was then that I started to feel my body getting ready to push, it was an involuntary action and there was nothing I could do to stop it. It was at that point that people started shouting, I was cannulated, and they then gave me a general anesthetic to deliver Henry immediately.
The obstetrics team that had been assigned to me were in surgery and I was told that they were waiting for them to come out to examine me, and as soon as I was 4cm dilated I would be taken into theatre for the section. I just knew that I was already way past that, I knew that Henry was coming.Emily Whalley @foxandthemooninfantsleep
Henry was born at 7:14am on 27th June 2019. When I came round, my husband showed me a picture of him, I knew there was something very wrong with the way he looked but when I asked no one seemed to give me an answer. My husband thought that maybe premature babies had a thicker vernix on their skin, but I knew deep down that something wasn’t right.
I was wheeled down to NICU that afternoon to meet my son for the first time. The smell and the heat of the NICU instantly hit me. It was so warm, and the smell was pleasant, but clinical, and yet somehow, it was comforting. I was wheeled into where Henry’s incubator was and there was a team of doctors around him, taking photos and talking until they saw me and my husband approach.
I was taken aback by the amount of monitors Henry was hooked up to, I was desperately sad I couldn’t see his face because of the CPAP mask that was helping him breathe, but more than this, I realised that my fears were right, and something was very wrong with his skin. His doctor told me that they thought Henry had something called Ichthyosis, a very rare skin condition to be born with. Digesting this information after a week of no sleep and extreme trauma to my own body was difficult. In fact, I don’t think I did process it.
Ichthyosis is a condition that causes widespread and persistent thick, dry, “fish-scale” skin. The skin of a person with ichthyosis is rough, dry, and scaly and needs to be regularly moisturised. Henry had been shedding skin in my womb and practising swallowing it, his lungs were filled with skin debris and he had a thick helmet like substance on his head, and in patches all over this body, because of this his facial features looked abnormal, his ears were low set, and his eyes were quite widely spaced apart. Henry also only had 1 palm crease, so it was suspected he also had downs syndrome.
I remember waking on the maternity ward the following morning to the sound of other people’s babies and the realization that I might not ever leave hospital was mine hit me like a ton of bricks. No-one has alluded to the fact that Henry was very poorly, I just knew they were testing him for common syndromes, they were awaiting a consultation with a dermatologist and told us that he had stopped breathing briefly in the night. And I think the severity of the situation really hit me at that point.
Henry had been shedding skin in my womb and practising swallowing it, his lungs were filled with skin debris and he had a thick helmet like substance on his head, and in patches all over this body, because of this his facial features looked abnormal, his ears were low set, and his eyes were quite widely spaced apart.Emily Whalley @foxandthemooninfantsleep
I was desperate to see Henry’s face and hold him, a feeling I hadn’t had yet and so I walked myself down to NICU. The nurses there are like heaven sent angels, and still to this day I think of them, they definitely get you through, they become almost like family. Parents I have spoken to that have had children in neonatal intensive care units across he country all say the same thing.
Holding Henry for the first time and touching his skin was so emotional, the love and emotion I instantly felt when his skin touched mine was beautiful but stroking his back and realizing just how strange his skin felt was also devastating.
When I was discharged 4 days later, leaving Henry behind was a pain I wish I could forget, leaving your tiny, newborn baby in the care of strangers is something that is so unnatural its distressing. Of course, I was lucky enough to be offered a bed there, on the unit, but I had my poor 3-year-old boy at home that had never been away from me and I needed to get back to him. So, I decided to spend my days at hospital and my nights at home with my other son, my husband would then run my expressed breastmilk down to Henry before midnight and then we would start the days all over again.
Arriving there though was comforting, it almost felt homely, whether that was because my child was there and when I was there, I knew that he was safe I don’t know but it wasn’t a trauma to be there as time went on, it was a comfort, and I started to panic about how I would manage at home without these amazing nurses and doctors watching Henry 24/7.
Henry very quickly progressed to the “nursery” part of NICU, this means babies can come out of their incubators and into cots. Henry did so well to feed with his tube and take milk from me, it felt amazing to be able to do that for him as it felt like that was the only thing I could do. I struggled to breastfeed my first baby too, so I really clung onto that and I believe that got me through it for the most part.
They nurses in there taught me how to tube feed Henry, care for his skin, they sat with me while I cried, they ordered me to go and rest, they reminded me to take pain killers, they cared for me, just like they cared for Henry, and that still blows my mind. They emotionally supported me while they saved his life, how do you ever repay that?
Henry’s road to recovery was a long one, he was admitted countless times to numerous hospitals in his first year of life mostly for severe reflux and aspirations, infections, and procedures, they are all stories in their own right, but he is now 19 months old, things seem to be calming down.
Our NICU experience was a positive one, a positive but life changing one. We got to bring our baby home after just 17 days, his chromosomal tests came back clear but it was confirmed that Henry’s skin condition was indeed Ichthyosis of Prematurity syndrome. He has a faulty skin gene that he had 1 in a million chance of having, which means that his skin feels abnormal, almost like sandpaper and he has to be constantly moisturised. So far though, we have been lucky with his skin and apart from it causing him some discomfort its mostly transformed from those early days.
They nurses in there taught me how to tube feed Henry, care for his skin, they sat with me while I cried, they ordered me to go and rest, they reminded me to take pain killers, they cared for me, just like they cared for Henry, and that still blows my mind. They emotionally supported me while they saved his life, how do you ever repay that?Emily Whalley @foxandthemooninfantsleep
Having a premature or a full-term baby at birth is an experience that will never leave you. It changes you as a family and as a person, its almost like an admission to a club. Not one you want to be part of but, looking back at our time there I would say that I met friends for life, in the other parents and the nursing staff. I feel privileged to have seen just how amazing our NHS is and how hard its staff work. I will forever be in their debt. Thank you to Stepping Hill NICU, Manchester Children’s Hospital dermatology and respiratory departments and to Henry’s amazing pediatrician.