Addressing Critical Knowledge Gaps in Newborn Health

Kylie's Story: Joseph's Birth

By Kylie Hodges on May 14, 2012
Preterm Birth

The following post was written by Kylie Hodges, originally posted on Impatient Optimists. It is part of a Blog Series leading to World Prematurity Day on November 17, discussing prematurity and highlighting the actions needed to prevent and reduce preterm birth, the leading cause of newborn deaths. Join us as we discover that everyone has a role to play.

On the way to the unit at the hospital where I gave birth, you pass the Neonatal Unit. On the door hangs a reclaimed old sign from the 1950s. It says “Premature Baby Unit.” There’s no doubt about what that locked door keeps hidden from view. Every time I walked down that corridor while pregnant, I said a prayer for those babies and those families watching and waiting for their preemies to grow, to get strong, and to come home.

In May 2009, at 26 weeks and 6 days into my pregnancy, I went to the hospital at 3 in the morning, fairly certain I was being a neurotic first time mother.

I had a headache and I felt revolting—there’s no other way to describe it. I was a bit concerned as my blood pressure had been fairly high at times during my pregnancy. The kind staff initially thought the same. They thought it was just a migraine, or maybe sinus pain, but they did some tests. Suddenly, about two hours after arriving, the room filled with very concerned looking doctors and nurses. I had rare rapid onset preeclampsia. I was very sick. A scan revealed my baby was in deep trouble. He was no longer receiving nutrition from me. He had stopped growing. He was tiny.

The decision was made to deliver my baby. His estimated weight was 800 grams, not even 2 pounds. My husband and I were terrified, but we stayed focused. I received steroids to help improve the baby’s lungs. I was given magnesium sulphate to prevent seizures. I was on a fluid drip. I was kept stable for 12 hours to help give the steroids time to work.

At 10 am my baby was delivered. The room was silent, everyone was very concerned. The baby was much smaller than estimated. Suddenly I heard a noise. I turned to my husband and said, “I’m sick of this; I’ve listened to labouring women all night, now I can hear babies crying.” There was a little pause, I could see eyes behind masks glistening, and my husband smiled and said, “That’s our baby.”

Joseph is the name we chose to give our baby; we had chosen the name ages ago; convinced we were having a boy. The name means “God will enlarge.” Joseph weighed 650 grams at birth, so we thought the name was very appropriate and it gave me hope that we had chosen that name so early. Perhaps it was a sign.

One of the doctors who delivered him was a great big Ghanaian chap who held my hand afterwards and said, “Joseph is a warrior name in my village. You have picked a good one, and he will be strong.”

Finally, later that day, I saw Joseph. Nothing can prepare you for seeing such a small baby. He was tiny. His skin was transparent. I could see his veins. He kicked at times, and I could still feel them inside, it was so strange. Unlike a lot of mums of very premature babies, I bonded straight away. It was us against the world, and he had the fight of his life on his hands.

With preemies, a lot of things can go wrong. They are not ready for the world, and a lot of development still has to occur. It’s a difficult balance for staff on the unit to balance the needs of the parents with the needs of these tiny babies. I felt separated from Joseph; I couldn’t hold him. I had to express my breast milk with a pump. It all felt very unnatural and scary.

But Joseph slowly made a full recovery. He spent 76 days in the neonatal unit before coming home with us.

For us, having a premature baby was a terrifying experience, but we were surrounded by a very experienced medical team, in a very well resourced hospital. My baby had access to an amazing medical team; he was treated as a person. This is not the reality for huge numbers of women and their babies around the world. If I had been in sub-Saharan Africa, I may not have been diagnosed. And if I was, the most they probably could have done is to save my life, not my baby’s.

This has to change. It’s unacceptable that this divide exists, and it’s something that makes me feel intense guilt and sadness.

When Joseph finally came home the enormity of everything that had happened hit me like a tonne of bricks, and I found it hard to come to terms with what had happened. I was so scared of losing my son. He is now nearly three, and has no problems as a result of his prematurity, because of the amazing care we received at the hospital. He is just like any other little boy. And I am so proud of him. I want mothers of all children to know the joy and feel the pride of watching their premature babies grow up as well.