Nothing prepares a parent for a premature birth. Sometimes it’s expected, sometimes it’s a surprise – either way, it’s traumatic on so many levels.
All three of my daughters were born prematurely due to Intrauterine Growth Restriction (IUGR). My twin daughters, Lily and Amelia, were born in July 2020 at 31+3 weeks and Ella-Mai was born in May 2021 at 31+6 weeks.
I knew my twins were going to be born early. My 18-week scan showed significant growth restriction and I was told pretty much every week to expect that I wouldn’t go past 23 weeks. I had a c-section planned for 32 weeks as this is the safest window to deliver MCDA twins facing difficulties as what happens to one twin can directly affect the other (MCDA twins are from the same egg, they share a placenta but have separate amniotic sacs). We walked a fine line in keeping Amelia safe without affecting Lily.
I ended up having an emergency c-section at 31+3 weeks due to Amelia’s rapidly reduced movements, this was a sign that she was struggling. I knew my birth was going to be unpredictable, but I never imagined being rushed to hospital with reduced movements.
“I gave birth and my arms were empty.”
When the twins arrived, they were immediately rushed off to the stabilisation room and I was instantly thrown into the crazy world of NICU.
Thoughts, fears, and questions looped around in my head. Were they breathing? Will I ever meet them? What if only one of them makes it? It’s all my fault, why couldn’t my body carry them to full-term?
My feelings were mixed and conflicting, to this day I still haven’t figured them out. On one hand I was super happy and grateful but on the other scared, powerless and guilty. Sure, we have all heard of premature birth but there isn’t enough awareness to prepare parents for what awaits them in NICU should they find themselves there. It’s much more than just a small baby.
Lily was intubated during her first moments of life; a tube was placed down her throat to aid her breathing until she was able to breathe alone. We had to wait seven hours to meet our daughters, to our distress they were covered in numerous wires and eye masks, surrounded by bleeping machines.
No matter how many times I watched the girls have their bloods taken, a cannula, or feeding tube fitted, it never got easier – it was a distressing experience each and every time. Amelia had an open duct in her heart which needed surgically closing at Great Ormond Street.
I never knew the complexity and all the medical challenges a preterm baby could face and the fight they had to have to be here.
“I didn’t know the true extent of how fragile a preterm baby can be.”
Ella-Mai
I found out I was pregnant with Ella-Mai when the twins were 8 weeks old. We were super excited! I always wanted to have my children close in age and before I turned 30. Ella-Mai was born 8 weeks premature like her big sisters. It wasn’t until 26/27 weeks when I sensed something was wrong. I was losing amniotic fluid and she was small. The next scan showed her head hadn’t grown and her stomach had gotten smaller. This triggered an early c-section. I didn’t see it coming and it hit me harder than I expected. I was told it’s common in twins so when I found out Ella-Mai was also growth restricted I blamed myself.
“My placenta, my daughter’s lifeline, failed again.”
Why was history repeating itself? Why was I staring another NICU journey in the face? Why had my placenta failed again? They wanted to deliver my baby early ‘because it was safer on the outside’.
I again, found myself having conversations with doctors and nurses that I never expected to have, facing difficult decisions and feeling unsure about whether my baby was going to be OK.
“I yearned for a full-term pregnancy, the way it’s meant to be.”
I was terrified of her being taken away from me prematurely. There was no natural delivery – and once Ella-Mai arrived she needed stabilising. Away from me.
I didn’t get to hold, touch or smell her – just like her big sisters, the first time seeing her was a photo on my husband’s iPhone.
After spending a combined total of 5 months in NICU, finding the positives helped me through. There are bright little moments that I hold onto – changing a nappy for the first time, the slightest weight gain, less bradycardia (slow heart rate) spells, the first time my little baby could wear clothes or took their first full feed and feeling their tiny hand in mine.
“A day doesn’t go by where I don’t think about NICU.”
Unless you are living it, I don’t think anyone truly understands what you are going through. I will forever value the friendships I made whilst in NICU, the support, companionship, kindness, and humour helped us through.
Who else can you express breastmilk, laugh, cry and chat about reflux with? You’re in it together, it’s a special bond.
I needed this even more once we had left NICU. I felt broken and I didn’t know who to turn to. I couldn’t find a voice like mine, with no medical jargon or scripted blog. I just wanted to know I wasn’t alone, that my daughters were going to be ok and all the things you feel in NICU are normal. So, I created a social media account @thestoryoftwins and began to share my story. I wanted to create a safe space for other NICU families, past and present so that they know it isn’t just them and whilst preterm birth may be a hidden corner of pregnancy, all the things we face, and feel are valid.
“I never thought I’d get to this point of feeling empowered.”
As time went by, my feelings began to shift. I started to notice and accept how brave I had to be. I now feel empowered to share my story and provide help and comfort to others. I don’t think there are many families who left NICU and found themselves back there 7 months later.
I, like many more mums who have experienced a preterm birth haven’t been given answers or an explanation. Women are left blaming themselves and no matter the complexity or length of someone’s journey, the feelings are usually the same. Guilt, blame and unanswered questions.
“I can’t make an informed decision should I decide to have another baby because no one can tell me why my babies weren’t getting the nutrients they needed.”
This is why Borne’s research is so important. They are searching for the answers so that every woman affected will not only understand why this has happened to them, but with the hope that it can be prevented in the first place.
If I could go back now and give myself some kind words it would be, just be easy on yourself. It may have looked like your body failed but focus on how strong it had to be and how much harder your body was working to do the things in pregnancy others may find so easy to do. Your route into motherhood may have not been perfect but you loved so much harder, and I can honestly say it has made me a better mum. The days are long, but I pull them close because I’ll always remember the times I was unable to hold them.