Over 90,000 babies are born prematurely or suffer from health problems in the UK each year. That’s one in seven babies, or around 250 babies a day. The earlier in a pregnancy a baby is born, the more likely they are to have health problems, especially if they are born before 34 weeks. Some of these premature babies may need to spend time in a hospital’s neonatal intensive care unit – where they typically stay until they are able to stay alive without medical support.
The month of September is ‘Neonatal Intensive Care Awareness Month’ - when people from all around the world come together in support of families with babies in a neonatal intensive care unit (NICU). Here at Merci Maman, we have decided to place a spotlight on the lovely Layla to hear about her motherhood journey and her own experience in the NICU.
Layla DeFreitas, whom you may know as @thestoryoftwins, is an advocate for raising awareness about premature births and the NICU. Having delivered twins at 31 weeks and then her third daughter at 32 weeks, Layla candidly shares her story over on her social media. Keep reading to find out more about Layla and her journey.
Our NICU Interview with Layla
Tell us about your motherhood journey?
I got married in May 2019 and started trying for a baby shortly after our honeymoon and we were over the moon to find we were pregnant with twins just a few days after New Year 2020. We couldn’t believe how blessed we were to receive a double gift at an early scan.
It all changed at a 16-week scan when we were told that our babies weren’t growing as they should, and their chances of survival were very low. We were told to brace ourselves to lose them. Pregnancy is something you normally celebrate, so this was devastating and very scary.
'I feared the worst, but you were fearless'
I never knew that I wouldn’t have a big bump and that my baby would be safer on the outside. This is very hard to hear as a mum, especially a new mum. I was trying to navigate a high-risk pregnancy and settle into motherhood, but it was all consumed by worry.
The twins, Lily and Amelia were born at 31+3 due to growth restriction and reduced movements resulting in an emergency c-section. Amelia spent 3 months in hospital (across 3 hospitals) and battled a severe patent ductus arteriosus (a persistent opening between the two major blood vessels leading from the heart).
'Before I became a mum, I was a NICU mum'
Lily spent 8 weeks in the NICU and came home before Amelia. I had a newborn baby at home and a newborn baby in the hospital. My heart was in two different places. Lily was intubated 3 minutes into birth, and they were successful in stabilising her again.
'I nervously put my hands through the tiny flaps of an incubator to whisper I love you'
Ella-Mai, my third child was also born prematurely, at 31+6 due to a growth restriction, her head had stopped growing and her stomach was getting smaller. She spent 6 weeks in hospital, and I was faced with having a newborn in the hospital and 10-month-old twins at home.
How are you finding having three children? Was your experience the same with each?
Of course, it can be challenging and tough at times, but it works, it’s our normal. Starting motherhood with twins you’re catapulted into the deep end and very quickly learn how to juggle, so adding one more didn’t feel too alien. Ella-Mai is a dream and has slotted in around Lily and Amelia’s routine and ways of doing things. With that said, she’s very fiery and no longer lets her sisters snatch her toys. Lily and Amelia were very difficult, to begin with – a popular twin tip is to establish the same routine for both babies very quickly. Mine, of course, spent long periods of time apart and developed at different paces in the first few months so it took quite some time to resettle them and bring their routines together, from feeds - to sleep.
'On the tough days, I remember how things started'
Are there any support groups/systems which help in finding comfort during your experience with the NICU?
Whilst I was in NICU, I never looked outside of the unit – I was in full hospital mode. My well-being was right at the bottom of the priority list. However, I was told about BLISS and there were posters in the NICU although I never really took it in. Our unit ran a weekly coffee session to speak with other parents, I didn’t attend much whilst the girls were super unwell, but the greatest support came from the other parents who are in the neonatal intensive care rooms with you.
What inspired you to share your story on social media?
I feel like NICU is a little hidden corner of pregnancy that no one knows anything about until you find yourself there. In all our lives we’re shown happy pregnancies and told how strong a woman is for how her body carries a child – it’s not always like this. When your pregnancy spirals out of control or your start to motherhood is worlds away from what is shown on TV and social media it can feel very lonely. I never want another woman to feel that way – other routes and starts to motherhood need visibility and deserve a space within the pregnancy world.
'I love the intertwined necklace because we’re exactly that, closely connected in all the weirdest, wonderful, and crazy ways'
We want to thank Layla for sharing her journey with us.
Little Roo Neonatal Fund
We’re honoured to be supporting the amazing work of the Little Roo Neonatal Fund, the local charity for the Neonatal Intensive Care Unit at St. Peter’s Hospital, in Chertsey, Surrey.
In the past twenty years the care of babies born very early, or with unexpected problems, has improved immensely, with great improvements in survival and outlook. This work is increasingly specialised and requires dedicated teams of highly trained nurses and doctors, available at all times. In Surrey, the only hospital with the appropriate staff, equipment, skills, and experience to provide this highest level of intensive care for the smallest and sickest newborn babies is St. Peter’s Hospital.
Little Roo Neonatal Fund therefore raises money to provide the support that the St. Peter’s Neonatal Unit continues to require, to offer the highest standards of intensive care for babies born in Surrey and further afield.