Our premie miracle Little Star – Skye

On the 18^th September 2018, at 27.5 weeks into my pregnancy, my world turned upside down. I had just returned from Florida, my last big holiday with my husband before parenthood, and I hadn’t been feeling well for a few days. I have lupus, so I went to see my lupus doctor, just to ensure all was ok and he told me I needed to go straight to The National Maternity Hospital and to bring my night-bag. There was a problem with my kidneys.

Just to explain, lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including joints, skin, kidneys, blood cells, brain, heart and lungs. It didn’t affect my ability to get pregnant, but we were aware that it can increase the risk of some pregnancy complications. Even with this in mind, I didn’t think that what I was experiencing was anything serious and certainly not as serious as I very soon learned it was.

I rang my husband en route to the hospital to tell him what was happening. Things changed rapidly when I got there. The A&E department phoned my husband Paul asking him to come in – explaining to him that it would be dangerous not to deliver our baby.

I didn’t even have a baby bump and was in no way prepared. On Thursday morning, Skye was delivered by emergency C-section weighing just 590g. I got a quick glimpse of her and she was whisked off immediately, Paul went with her. It was so traumatic for me. I didn’t get to see her for two whole days, because I was also very unwell and needed to be constantly monitored. Those two days were the hardest days of my life, I couldn’t stop thinking about her. To be honest, I think my mind has blocked out a lot of what happened, it was just all such a shock; a horrendous experience for me. I had to go to recovery and I knew my baby was very sick and I couldn’t be with her.

Paul took a picture of her for me and all I could see was that there were more tubes than my baby in the incubator, it was terrifying for me. I have to say the staff were amazing in reassuring us and keep us updated on Skye’s health.

As soon as I could walk, I went to see her. I was so overwhelmed, the nurses were incredible – so warm, so friendly, amazing! They did their utmost to take our worries from us, reassuring us that all was going to be ok. All I could do was cry, I think, for about the first ten days! 

Skye had chronic lung disease, hypertension, problems with her kidneys and Retinopathy of Prematurity (ROP). The first time that I held Skye is a memory I will treasure forever. I well up even at the memory of it.

In December, we found out that Skye needed laser surgery or she may lose her sight, that was another shock for us! Paul left work to come to me and Skye had laser surgery that night. She had feeding tubes and was on oxygen all the time. It was like one step forward, ten steps back at times, it was really tough.

Skye was in NICU for four months. My life just suddenly became being at Holles St. Thinking back, I was very lucky I didn’t have any other children to care for at home, so I was able to spend my days with Skye. It brought Paul and I closer, we were in it together. This was the hand we were dealt and we went with it, taking every day as it came. I’m not saying that it was easy on any level though! I had to keep telling myself, this is all to help Skye get better and to come home, that’s what I just kept my focus on.

The staff were absolutely incredible. They had all the time in the world for us, answering every question, some of which I asked a hundred times each! They never tired of answering us, always there to support, comfort us, reassure us, I always had a shoulder to cry on when I needed it. Skye meeting mini-goals and her milestones brought me the greatest joy and the staff were incredible at finding all the little positive steps Skye made and celebrating them. I still do that. Phenomenal, that is the best word I can find to describe staff, they honestly really helped us every step of the way.

The support from the other mums there too was incredible. In our group, there was five of us and we are still all in touch and meet up every month with our little ones. The friends I made at The National Maternity Hospital, I know are friends for life, we go through so much together and understand each other so well. Now we can laugh and joke about some things we went through, which we couldn’t have during those very difficult days.

Recently, Skye ended up winning a photo competition and she got chosen to present an award for The Irish Nurses and Midwives Association. She also started preschool in September 2021 and is loving it!

Since the day Skye was born prematurely, it has taught me not to take anything for granted. As a family, if we want to do something, we just do it, we don’t hold off anymore, life is too short.

Dr Colm O’Donnell, Consultant Neonatologist at The National Maternity Hospital, who was part of the team who cared for baby Skye said, “Premature babies need a lot of support after birth. Tragically, some of them die from the complications of being born so early. The survivors face many challenges and can spend months in hospital. For some, the challenges persist throughout childhood and for the rest of their lives. However, the outlook for premature babies overall is very good – the majority of them survive without long-term problems. The prospects for survival have improved markedly over recent decades. This is thanks largely to improvements in medical care that resulted from research. It is crucially important that we continue to refine the care that we give to babies, so that even more of them can live long and healthy lives.”