Parent & Baby Series- Baby Ember

Caring for a baby with a stoma

November 2020, we were living in a strange world, amidst a global pandemic and my partner Ryan and I found out that we were pregnant! We were so excited, we immediately started to plan for baby’s arrival in July 2021 and lockdown was a great excuse to spend our time shopping online for everything our little one would need.

May 2021, I was in the first day of my 3rd trimester and started to have contractions, I was admitted to the labour ward, scared and entering the unknown world of having a premature baby. Doctors informed me we would need to deliver the baby immediately as my placenta had abrupted and with that I was rushed off to theatre for a caesarean. I was overwhelmed with a feeling of “this isn’t how it was supposed to be!”

“Placental abruption is a serious condition in which the placenta starts to come away from the inside of the womb wall.” -NHS England

Our darling girl Ember was born, and I vaguely remember the nurse coming to me and saying, “I’ll be looking after your baby and will be taking her straight to the Neonatal ward”. We were suddenly thrown into a world of emotions we did not know existed. Our baby girl was rushed off with monitors and breathing equipment attached, and she was placed into an incubator that imitated the womb. We didn’t get a chance to see her and when we did, it was simply a photo a midwife had taken of our daughter.

Ryan was able to meet Ember shortly after her birth, while I had to wait for 7 painstaking hours in recovery until I was able to see her. Ryan and I were both in shock, we spent all day, every day by Ember’s side.

Day 10 in the Neonatal ward and Ember was diagnosed with Necrotising enterocolitis (NEC), a common illness in ‘preemie’ babies. Sadly, Ember became very unwell, and we were told that she had been diagnosed with Sepsis. The amazing team at Northampton General Hospital (NGH) looked after Ember incredibly well and she recovered with a course of antibiotics.

Necrotising enterocolitis (NEC) is a serious illness in which tissues in the intestine (gut) become inflamed and start to die. This can lead to a perforation (hole) developing, which allows the contents of the intestine to leak into the abdomen (tummy). This can cause a very dangerous infection.

Week 5, Ember was still in hospital, and we received a dreaded ‘No caller ID’ phone call while Ryan and I were both at home. The feeling of worry and dread was intense. Ember’s consultant informed us that Ember had become very poorly overnight, and we needed to get to the hospital immediately. When we arrived, Ember’s stomach was severely swollen, almost translucent, she was swollen all over and unresponsive to our voices. The consultant had already arranged a transfer to Leicester Royal Infirmary (LRI) as he was sure the NEC had returned.

We arrived at Leicester Royal Infirmary (LRI) to what I can only describe as a space-age mind-blowing ward with bays of poorly babies, beeping monitors and a sea of parent’s faces, all with the look of worry and distress. We soon realised we were not alone, and these other parents were sharing our same feelings.

The surgeons arrived just as Ember was settling into her new incubator and assured us that they work 24-7 and would be monitoring her very closely, and that they did.

48 hours later and the surgeon informed us that they were taking Ember down for surgery and of the three possible outcomes from the surgery, the stoma was the most likely. We didn’t really have any time to absorb what was said, we just wanted her better and they needed to do what they could to save her.

A few hours later, the surgeon spoke to us and told us what they had found. Ember had a perforation in her intestines as well as a blockage in her bowel, which meant her intestines were about to burst. The surgeon removed 5cm of intestine and brought the two ends out onto the stomach, ready for a stoma bag to be fitted later that day. We were so ready to see our little girl. A lovely nurse brought Ember round to us in her incubator and carefully showed us the stoma and explained how it worked. We will never forget the wonderful nurse, her kindness and patience made it easier for us to process what was happening.

We had so many new things to learn; how to change and bathe her with a stoma bag, avoiding tummy time and adjusting to being a parent in a different way than we first thought.

Without the surgery, we could have lost Ember and we will be forever grateful to the amazing NHS staff, doctors, nurses and surgeons at the hospitals for taking care of our daughter.

We were introduced to our assigned Stoma Care Nurse, Michelle from SecuriCare, at LRI and she was incredible. Michelle constantly reassured us that we could handle anything that was thrown our way, we had one-on-one lessons in changing Ember’s stoma bag and we learnt all the tools and products needed to make the process as quick, easy and painless as possible for Ember.

Week 10 and Ember was still in hospital. We were transferred back to Northampton General Hospital where we spent a further 4 weeks until they allowed us to finally go home.

We had great after care with Michelle coming for home visits once we returned home and SecuriCare calling to check in on Ember and make sure we had all the supplies she needed.

In September 2021, we were called into the hospital and given the news that Ember’s stoma could be reversed. We decided to go ahead and thankfully the whole procedure went really well and Ember had recovered amazingly. We’re now able to enjoy cuddles and baths and relaxing together as a family.

Ember has been so amazing through this whole process, she’s been happy and not phased one bit, this is her story and who she is. The smile on her face got Ryan and I through every day and nothing else mattered to us other than her happiness and the ability for her to live life to the fullest.

I will never forget how scared Ryan and I were. The unknown, the constant questions of, why us? But talking to other parents on the ward, going through the same thing helped immensely. We were lucky that Ember had the option to have her stoma reversed and we only experienced 4 months of living with a stoma.

This whole experience has really taught us that things don’t always go to plan, but we’re so blessed to be as lucky as we have been.

We will always teach Ember that her scar tells a story of how amazingly brave and strong she is. We’re so thankful and grateful to the NHS for keeping our baby girl safe and for their support while we battled with a difficult time in our lives.

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by SecuriCare Team

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