Today is World Prematurity Awareness Day, recognized by wearing the colour purple, and purple lighting on national monuments. Prematurity ruined my preconception of motherhood. That sounds like a gloomy, dramatic statement, but it’s the honest truth.
Torran’s story is one of 15 million babies across the world born too soon.
At 20 weeks gestation, I found out that Torran didn’t have enough amniotic fluid, a condition called oligohydramnios. Twice in the span of as many weeks, doctors offered to terminate my pregnancy.
By that time, I had those lovely pregnancy butterflies that told me from within that I had a little person brewing. I couldn’t let him die.
At 26 weeks and 6 days, I delivered a baby with a mouth full of blood who struggled for breath. I barely saw Torran before a respiratory therapist whisked him away. Because of my lack of amniotic fluid I didn’t know if my child could live. His odds, I was told, were not good.
The first time I held Torran, I barely knew he was there, a fragile gift wrapped in a blanket. That was the best 60 seconds of my life.
My introduction to motherhood was not cute photos and warm cuddles. I spent 12 hour days with medical staff watching my son fight for life. I sang lullabies to a plastic box and watched my son’s delicate skin flaking off as it dehydrated. I cried more than I ever thought possible.
After 109 harrowing days in the NICU, including surgery to insert tubing into Torran’s brain, he was supposed to come home. Instead our little “Murphy” developed a shunt infection, and we spent another 30 days in Sick Kids Hospital with a baby that I thought might never come home.
The effect of prematurity doesn’t end for parents or their children after discharge.
Torran’s first year at home felt like a medical clinic. We isolated ourselves from anyone with the smallest sniffle. Our first family trip had to be near a city with a children’s hospital that could do brain surgery – and we ended up in hospital, again.
That burned us badly.
Our diaper bag included a two page summary of Torran’s hospitalization and medical diagnoses, just in case we ended up in hospital. Every year for the first three years, he received a new diagnosis as he struggled to meet his milestones.
Motherhood meant dealing with challenges I never considered, like how to get my baby to stop eating his hearing aids, or how to negotiate a return back from Disney World if Torran’s headache indicated brain shunt failure.
I have wonderful friends in the preemie community who experience less and more medically fragile outcomes than us. Although I tell myself I must not do it, I’m always living in a state of comparison: of Torran to other children, and of us as parents.
Torran kicked death in the pants and won 8 year ago but my heart has not healed.
Nor do I think that the heart of any preemie parent can heal when they go out into the wider world and experience a lack of understanding.
I’m sure comments like, “Well, she’s home now, so everything’s OK, right?” or “All parents worry” aren’t meant to be harmful. Perhaps we preemie parents can’t “get over it” because we know that our children will have a rougher go at being successful in life than the full term child with uncomplicated birth. How can a parent not worry knowing that information before their baby even comes home?
Some effects of prematurity, like being small size for a child’s age, or feeding difficulties, are not visibly stamped on a child’s head for onlookers to see. Commentary upon about a preemie’s stunted growth (“Is she a picky eater?” “Why don’t you feed her enough?” etc) throws that parent back into those days when their child was little more than a skeleton with a heartbeat.
I have a friend who faces the biggest heartbreak when her surviving twin is seen as a singleton boy. She had two preemies and one did not come home.
I have another friend who faces the same pain when she’s asked, “Are they twins?” of her triplets, one of whom did not survive.
The effects of prematurity and infant mortality affect parents and children in a multitude of ways. We are largely unaware of them in Western society because we have medical care that helps prevent infant mortality and improve outcomes.
However, there is more that needs to be done to help preemies and their families that hospitals do not do. Hospitals don’t routinely provide coping therapy for parents with a critically ill infant because the baby is their patient. Outreach programs are few and far between for parents who go home with a preemie. Schools don’t understand the effects of prematurity on learning, especially because most researchers do not follow preemies beyond 3 to 5 years of age.
I brought Torran home overwhelmed with gratitude for the people who reached out to us and supported us, as well as the many medical staff & their support staff who helped him survive. (The next day we ended up in hospital and Torran had another brain surgery.)
If you know someone who is a preemie parent, offer to cook meals, or take them to the hospital or appointments. Give your friend a disposable camera that they can leave with the hospital staff to take pictures of baby when parents can’t be there (some babies have to be relocated to a facility in a different city). Offer to look after older siblings, or help prepare the baby’s room.
When baby comes home, be patient, and follow the routine your friend suggests.
Keep away when you’re sick, and don’t judge them for their strict adherence to infection control. After all, pneumonia is a leading cause of neonatal death, and preemies are more prone to respiratory illnesses.
Understand that your friend may have many strong emotions, including anger, guilt, depression, and is at risk for PTSD (even dads!). There are lots of ways to help that carry a huge impact for your friend and their family. Reach out to your local preemie support group, or a national charity like the Canadian Premature Babies Foundation. Ask them how you can help make life better for a preemie and their family.
I didn’t ask to have a premature child but I am incredibly proud of all my son has accomplished. I honour my husband’s strength and the hours he stood by the box, even though he felt helpless. I have unending gratitude for the medical staff who gave their expertise to Torran’s fighting spirit. I’m lucky that I live in a country where I didn’t have to lose my home to bring my medicalized baby home.
Prematurity ruined my preconception of motherhood. To cope with our family’s preemie trials, I reconstructed my definition of motherhood. As hard and tiring as it may be, I’m damned proud to be the mother of a preemie.