Today is World Prematurity Day

17th November is World Prematurity Day. Unfortunately prematurity is the leading cause of death in children under 5. 15 million babies are born prematurely worldwide every year and 1 million of these babies don't survive (Bliss charity). Around 60,000 babies are born prematurely every year in the UK.

"Why is he not crying?" "Is he ok?" I asked...and no answer...there were about 3 doctors and 2 nurses in the room, blood everywhere...

My son Luca was born 30 weeks and was very sick: he suffered from Sepsis, Meningitis and Brain Hemorrhage. I was able to briefly see him and then he was taken from me and put into a resuscitation unit and wheeled straight away to the neonatal unit. A spot was made free at the High Intensive Care Unit...a baby did not make it.

The nurse wheeled my bed to the neonatal unit to see Luca. We had already chosen his name, which means 'bringer of light'. Seb, my partner was there waiting for me. The room had loud noises, alarms going off, something I was very unfamiliar with. There he was inside the incubator: no clothes, massive disposable nappy folded in half and cables everywhere attached to his tiny body, monitoring his vital signs. So many tapes, I could hardly see his face. I cried, he looked so fragile, and a guilt feeling overwhelmed me: 'Why him, not me?'. 'Can I please hold him?', I asked, but the nurse said it was not possible. In fact, it took 10 days till I was able to hold Luca for the first time. In the first week, he was not responding to treatment and we were not sure if he would make it. I was asked to express milk, because that was part of his treatment in addition to caffeine injections, magnesium, antibiotics, iron and other things I can't recall. But my body was not ready for milk, and stress and sadness affect the production of breast milk. I had to sign a form to allow donor's milk to be given to Luca. Luca finally responded to treatment and I learned how to change his nappy and care for him inside the incubator, which gave me some way to connect physically with Luca. My mental health however declined, I used to cry daily, and was uncapable to leave him, I had to be there with the little one. So the hospital arranged me a room, where I stayed during his entire treatment in the hospital. I had my little routine of waking up and going to the neonatal unit and would read for him, play music, meet the consultants every day and follow his progress. Luca had weekly head scans, weekly lumbar punctures and medications from day one. The neonatal journey was not easy, but thankful for NHS doctors, nurses, universe that he came back home. The support from my partner, my family, the neonatal mums, the nurses helped me get through this. He is home, he is so clever, but diagnosed with controlled hydrocephalus and mild cerebral palsy, which means he is getting support from physiotherapists now.

As if going through this once was not stressful enough, my youngest son Matti was then born 27 weeks, even earlier and even smaller. I share his story another time, but he is one year old now and again I am incredibly grateful for the NHS doctors and nurses and friends and my partner Seb. He was born in covid times, so things were very strict and different, worth writing his story separately. He is home too and has the most beautiful smile.

Why share this on Linkedin? I thought I share some aspects which might help better support employees who are parents or carers going through this:

Give some space: no one expects or plan to have a premature baby, so we are overwhelmed with the experience and it takes time to digest and understand all this.

Volunteer one colleague only to be in contact to do some regular checks to see how they are: In my case I had my dear colleague Eve who texted me once a week to check how Luca was doing and that was really nice to have that contact but not from multiple colleagues, which would have been too much.

It is a rollercoaster journey: We take each day at a time, one day Luca was doing well, then the following day, his breathing was deteriorating and intervention was required. Day 10 can be a good day and day 15 can be horrendous and day 16 can be a better day, so be kind and just say that they are thinking of them, and understand that their mental health is affected and needs time.

More overprotective: very common to see parents and carers from premature babies to be more overprotective. I behave like this too, but have the understanding that we saw them very little and vulnerable and this image stays with us forever. I get flash backs very often of the whole neonatal journey.

Number of weeks is not the answer: some babies are born 28 weeks and do better than 31 weeks baby, their progress really depends on how sick they are and any medical predisposition. So comments such as: "Ah don't worry I know a friend whose baby was born 26 weeks and is doing really well." Please avoid saying that, because each baby is different and does not mean anything.

Discharge from hospital does not end there: All premature babies remain in observation and are invited for regular checks with the consultants until the age of 2. Some babies go home with oxygen and other supportive equipment. Others like Luca receive care from other health professionals and he will be under their care till he is 18. So time for hospital appointments will be needed.

Ensure policies and training are up to date: Offer support to pregnant staff such as reasonable adjustment to ensure mums to be can work without affecting the health of the baby. Managers to receive good training to support their staff.

Reduce stress from work if possible: for the first time in medical history it has been proven with physical evidence that stress during pregnancy can affect baby's brain. Luca and I were part of this breakthrough research which now shows high levels of cortisol in pregnant women (the researchers took samples of my hair to test cortisol levels) to affect baby brain development (the doctor took a MRI scan of Luca's brain), which explains why some babies have emotional issues later in life. Here is the link to the summary of the study (Stress in Pregnancy May Influence Baby Brain Development - Neuroscience News)

Keep abreast of the changes in policies to better support and inform pregnant staff: currently there is an entitlement of 52 weeks for maternity leave and statutory maternity pay for 33 weeks, but since a campaign which was backed by many people including myself, there will be a change in this. From April 2023, maternity leave will be extended with an extra 12 paid weeks for parents of premature babies (￡160 per week) who spend more than 1 week at the neonatal unit, also called neonatal leave. Premature baby is any baby born 37 weeks or earlier. If baby dies soon after is born, maternity leave is there for parents and they can take it to take time off and adjust to the sad news.

Be a leader and show proactiveness: why not consider a voluntary change of policy and offer 'neonatal leave' to staff, why wait till legislation changes in 2023? So many parents, specially fathers have been taking sick leave to be able to see their premature babies. Offering employees the neonatal leave will reduce their stress levels, allow them to concentrate on the family matter and better perform once they return to work.