I think about the essay Welcome to Holland by Emily Perl Kingsley a lot. Her explanation of what it’s like to raise a child with a disability helps approximate (for me) the unexpected realities that ensue for families who encounter significant pediatric health challenges. Although her essay is not about prematurity and it’s not new, when I sat down to write about World Prematurity Day I couldn’t help but think back to her words and her metaphor. What’s marvelous, of course, is that her essay is built of love so all of us have a chance to understand it.
Sunday, World Prematurity Day, is a day to think cautiously, bravely, and empathetically about the opportunity to improve the lives of children born prematurely, all around the world. When a child arrives early there are obviously significant health challenges not only to survival but to a long life thereafter, sometimes with significant disability. Parents all over world suffer and learn to thrive with and after prematurity every single day. In fact,
Prematurity is the leading cause of death in newborns. Although some risk factors are known for preterm birth, we don’t know very much about the cause.
None of us will really ever know what it’s like to survive and thrive in someone else’s experience. So we share stories, quotes, photos, and moments as best we can to help others understand. As I’ve met and been invited to help care for parents, families and children who are born prematurely, one thing is certain — it’s a journey. It starts often with surprise and evolves individually. The essay by Kingsley is clearly about the journey, not about the diagnosis of prematurity at the time of birth.
Here’s what a colleague and friend, Kim, shared with me about her experience with her twin daughters who were born over three months early:
Much to our surprise, our twin daughters made a surprise entrance over three months before they were due.
Like many families who spend months in the hospital, we have been elated and crushed more times than we can count. Elated when one of our daughters came off the ventilator after over two months and finally sucked on a pacifier. Overjoyed when she drank from a bottle for the first time. Crushed when she had to get a gastrostomy tube (feeding tube) because she was aspirating milk. Thrilled when our other daughter smiled for the first time. Terrified when her oxygen saturation monitor alarmed at home in the middle of the night and we had to turn up the oxygen.
But our little girls are strong and beautiful, and they are survivors, and they have the biggest smiles we’ve ever seen. We are very aware that families in many other countries are not so fortunate. As one of the perinatologists said to us right before they were born, in most low-income countries we wouldn’t even be having a conversation about what would happen in the days after their birth because there would be nothing to discuss.
The optimist in me knows the luxury of today: medical science married with new interventions, new global research, and new partnerships around the world will not only help curb the suffering from prematurity, it will help prevent preterm birth from even happening. Prematurity may be more common than you think. Thanks to the Global Alliance To Prevent Prematurity And Stillbirth for helping me gather background and links on these numbers and realities.
Prematurity: The Numbers
- 15 million babies are born preterm every year and some 1 million die due to prematurity. There are 10,000 babies born prematurely in Washington State (read more detail in The March of Dimes WA State report card). Although nationally preterm birth rates are just starting to fall, outcomes vary by state.
- Preterm birth rates are increasing in almost all countries that track and share reliable data.
- More than 1 million babies worldwide do not survive their first month, and many others face lifelong health problems. The cost of caring for a preterm infant can be in the millions.
- Baby boys are at higher risk for death and disability due to preterm birth. Baby boys have a higher likelihood of medical problems including infection, jaundice, birth complications, and congenital abnormalities. “But the biggest risk for baby boys is due to preterm birth,” says Dr Joy Lawn, a neonatologist and epidemiologist at the London School of Hygiene & Tropical Medicine.
- Huge racial/ethnic disparities exist. In Washington State, the rates for prematurity are reported: Hispanic 10.9%, White 9.0%, Black 12.3%, Native American 16.8%, Asian 10.0%
- Risks for lifelong disabilities are affected by where a baby is born. Studies funded through the Bill & Melinda Gates Foundation found that in upper income countries, more than 80% of babies born prematurely survive and thrive. In middle-income countries, the risk of disability for babies born at 28-32 weeks is double that of high-income countries. And in low-income countries, preterm babies are 10 times more likely to die than those in high-income countries. In those low-income countries death for a premature baby is twice as likely as disability.
Prematurity: The Challenge
- Work here in the US continues to focus on preventing planned, early deliveries. Babies born early are at greater risk of being admitted into the neonatal intensive care unit. Premature babies are at risk for eye problems, lung problems, heart problems and chronic behavioral and neurologic challenges.
- Babies born early are at a 20% greater risk of complications including: breathing, feeding, and temperature problems; sepsis (severe blood infection) ; and cerebral palsy.
- Children who were born premature are 5% more likely to have an intellectual or developmental disability.
- More than 75% of worldwide premature deaths are estimated to be preventable even without intensive care. Preemies are at a 50% greater risk for death within the first year of life.
Prematurity: Things To Know Now
- Timing: Most often, it’s not in our control when our babies arrive. If it is, work hard with your care team to ensure your pregnancy or those of friends and loved ones isn’t planned prior to 39 weeks gestation. A national initiative to raise awareness about preventing early, planned deliveries is worth a peek.
- Healthy Pregnancy: There are things you can do decrease risks for an early birth. Don’t smoke, seek regular prenatal care, work to manage stress, inform your doctors if you’ve had a baby early in the past, and inform them if you’re using prescription of illicit drugs. If you’re considering IVF for pregnancy, work to have open discussions about the least number of embryos for transfer to avoid multiples. The more babies you’re to deliver the more likely you’ll have a premature delivery. A great resource here on tips for healthy pregnancy from Global Alliance to Prevent Prematurity and Stillbirth.
- Awareness: Join families, caregivers, and researchers celebrating World Prematurity Day on Facebook. Share stories, videos and identify your location on an interactive world map.
- Kangaroo Care: Support skin-to-skin anywhere in the world! Kangaroo Mothers Care (KMC) is a technique that researchers estimate can save hundreds of thousands of lives annually. KMC is taught to mothers and caregivers where they are instructed how to keep premature babies in skin-to-skin contact 24 hours a day. KMC has proven effective in preventing infections, promoting breastfeeding, regulating the baby’s temperature, breathing, and brain activity, and encouraging mother and baby bonding.
- Research: Leading researchers and global health organizations have issued a call-to-action on a consensus research agenda to address preterm birth. Research from around the world will continue to advance babies’ health globally.
Thank you for raising awareness of premature birth. My daughter was born unexpectedly at 32 weeks – we still don’t know why, though we suspect she simply kicked too hard! (She burst the amniotic sack and her foot entered my cervix.) I had absolutely no knowledge around premature birth at the time, and it’s an understatement to say that it was a very difficult time – even though we were in a specialized NICU with the very best care and equipment, and never in any real danger. I cannot even begin to imagine what it’s like for parents whose children are born earlier, with more risks and dangers, or without the first-world facilities we had access to.
Something else to be aware of is the difficulty of breast-feeding a premature child. When your child is born early, your body is not ready to produce milk yet. Add to that the fact that you can’t hold your child often the way a ‘normal’ mother can, so the milk-producing hormones don’t get that boost. (Even though kangaroo care is strongly encouraged, logistically you just don’t get the chance to hold your child as much, especially if they are under UV for jaundice.) And then of course premature babies can’t suck (or often even take food orally), so that feedback loop isn’t there either. Still there’s a lot of pressure (from others and from yourself) to breastfeed, since it’s best for your child. Honestly, it’s brutal. Imagine pumping every three hours for 4 weeks and never getting more than an ounce of milk (much less to begin with). Not every mother has this experience – I saw mothers in the pumping room at the NICU who were filling and re-filling bottles – but for me it was one of the most stressful parts of being a NICU parent.
Happy ending: my daughter is now nearly four, vigorous, healthy and bright, and the NICU days are a distant memory.