Knowledge is what got us through this journey

Ali and Daisy from London were excited when they found out they were expecting their second child in 2017. After a complicated first trimester, Daisy went into labour at 23 weeks gestation. Baby Jannah was born weighing just over 1 pound and spent 105 days in hospital before finally going home. This is Ali’s story.

A small premature baby in an incubator

My wife and I were delighted when we found our we were expecting our second child. We’d been married for 8 years and our, son, Ray, was 8 years old.

At 11 weeks, my wife experienced heavy bleeding. We were very worried that she was going to lose the baby. We went to the hospital and the next morning and were sent for a scan. I’ll never forget the moment I saw our baby, alive and kicking, on the screen. We were told that everything looked healthy and were sent home.

Feeling hopeful

The weeks passed us by, and we began to feel hopeful. At 17 weeks, my wife started to experience some pain. She went to see her GP, and, after some tests, was advised to go back to hospital due to an abnormal urine test. At the hospital, a doctor checked her over and told her that she was dehydrated. We were sent home and she was given orders to drink more water.

I remember it was a Monday when Daisy she started to bleed again. She was 22 weeks pregnant. We went straight to the hospital. Everything seemed to happen so quickly. They performed an internal examination and said that my wife’s cervix was open. She was quickly whisked off to the labour ward.

“They put us in a bereavement room. We were in absolute shock when a doctor came in and told us that this delivery would be classed a late miscarriage as the baby was so tiny.”

Moving mountains

I couldn’t believe what I’d just been told. I immediately started to research our situation online. I even scoured academic medical journals to try and find answers. I found out that the cut off for birth support in the UK is 24 weeks however, if a baby is born between 22 and 24 weeks, it is a grey area. This means it is left to the doctors to decide.

The following day, armed with this knowledge, I requested a meeting with our senior doctors and consultants. They listened to what we had to say and explained how risky our situation was. They told us that our baby had a tiny chance of survival and could be very poorly. We felt as if we had to move mountains in order to be heard but were determined to continue advocating on our baby’s behalf.

After more scans and lots of difficult conversations with the medical team, a plan was put into action. If my wife gave birth before 23 weeks, it would be classed as a miscarriage. However, if she gave birth after 23 weeks, they would both be sent to a specialist hospital for premature births in Oxford. My wife had to hold on until the Friday. It was an awful position to be stuck in. We were terrified that baby would arrive too soon.

Waiting and hoping

Time passed very slowly as we counted the days. When Thursday morning arrived, when baby would almost be at 23 weeks gestation, I brought up our transfer to Oxford with the doctor. I wanted to make sure all the necessary arrangements had been made. I think I was prepared for this to be difficult as I felt as if I’d be fighting for days. Surprisingly, the nurse came back and said that transport could be ready later that day. I had to make the nurse repeat herself as I couldn’t believe that we were so close to finally getting to a hospital that would support my wife and baby.

By Thursday afternoon, we were there. Daisy went into active labour later that afternoon. I can’t help but feel that our baby was holding on until it was somewhere where it would stand a chance of survival. The hospital was able to provide steroids to boost the baby’s lung development, and additional drugs to prevent cerebral palsy. They were giving us the best chance possible. However, the birth was extremely high risk, and no one had any idea how the baby would be born and whether it would breathe or be stillborn.

At a few minutes past midnight on Friday 17 March 2017, Jannah was born weighing just over 1 pound. She literally scraped into 23 weeks gestation by 4 minutes.

“She was wrapped in special cling film gasping for air and was immediately taken to the intensive care unit.”

Uprooting our entire lives

Jannah was cared for around the clock in the neonatal intensive care unit. In those initial days, we took each hour at time. With so many parents losing babies around us in hospital, my wife and I clung onto hope. We lived over an hour from the hospital and had to uproot our entire lives. We left our 7-year-old son with his grandparents and moved into temporary hospital accommodation. We were desperate to be with Jannah around the clock. I made special arrangements with work who allowed me to work flexibly from the hospital.

My wife focused on the gruelling task of expressing breastmilk for Jannah. This was no easy task having given birth at barely 23 weeks pregnant.

“Our life was completely focused on observing our tiny baby developing outside of the womb. It was a time of our life we will never forget.”

In total, Jannah spent 105 days in hospital. This included 5 weeks in the neonatal intensive care unit. Jannah is now 2 years old and is a big sister to our third baby who was born at full term earlier this year.

Knowledge saves lives

I am supporting the Tommy’s Tell Me Why campaign because I am passionate about the importance of research. Jannah is here today because my wife and I had access to information throughout our experience. Knowledge is what got us through this journey. Tommy’s helps make research accessible and I believe this is vital for parents of premature babies.

1 in 4 pregnancies end in loss – and most parents never find out why due to a shocking lack of research. It doesn't have to be this way – and Tommy’s research is finding the answers. But research into pregnancy loss is currently seriously underfunded compared to other medical conditions. 

We believe that every parent deserves answers. Let us know if you agree

Take me back to the #TellMeWhy campaign hub

Learn more about our pioneering research

  • Predicting and preventing premature birth

    Premature birth is the biggest killer of newborn babies in the UK and much of Tommy's research is devoted to predicting and preventing this. One discovery has made a huge difference to our ability to treat women in time.

  • Finding the reasons for stillbirth

    In more than half of stillbirths parents are not given a reason for their babies' death. Doctors simply do not know why it happens. This animation looks at how Tommy's researchers are finding out the causes of stillbirth and how this leads to treatments and saved lives.

  • Finding the reasons for miscarriage

    Too many miscarriages are unexplained. Our research is entirely dedicated to finding out why miscarriages happen and how to prevent it in the future.

Read more stories

    Was this information useful?

    Yes No