Today, we’re delighted to be talking to Nick Hall, the President and Co-Founder of Graham’s Foundation about prematurity and prematurity awareness.
Graham’s Foundation empowers parents of premature babies through support, advocacy and research to improve outcomes for their preemies and themselves.
We deliver on our purpose through:
Support designed specifically for the long-term needs of preemies and their parents. In addition to our NICU, transition home, and remembrance care package programs, we have 20 trained parent mentors available 24/7 via email, phone, and text and the market-leading app, MyPreemie. Whenever possible, the support we offer is emotional, intellectual, and practical.
In 2014, we provided peer to peer mentorship to over 100 families and facilitated a highly engaged online community made up of over 25,000 parents and supporters in the US, Canada, UK, Australia, NZ, Ireland, South Africa, India, and Mexico. More than 50,000 people used the resources on the Graham’s Foundation website.
Advocacy that connects organizations, medical professionals, and brands with thousands of preemie parent voices to impact positive change for preemies and their families. Through our active social media communities, we are able to quickly collect self-reported data from parents about their experiences in the NICU and beyond, their level of engagement in their preemies’ care, the support they received, and the partnerships they were able to foster, as well as what they need and want in the hospital and at home.
Research representing the priorities and needs of preemies and their families. Our aim is to help shape and support breakthroughs through strategic partnerships focused not only on preemie outcomes, but also family-cohesive care in the NICU and beyond. We represent the needs of preemie parents at conferences around the world attended by neonatologists, neonatal nurses, industry, academics and other professionals who work closely with preemies and their families.
Recognition of the courage and commitment parents of preemies demonstrate as they care for and advocate for their babies and children through efforts such as Parents of Preemies Day. Our aim is to draw worldwide attention to the real, long term costs of prematurity.
More than 100,000 people engaged with the Parents of Preemies Day Facebook page in 2014. Our posts have reached more than 500,000 people, and the vast majority of these interactions have been with parents of preemies. We know from comments and messages that many of these are experienced moms and dads who come to offer support and inspiration to new parents. Since its inception, thousands of people have attended Parents of Preemies Day events in the US and around the globe. #parentsofpreemiesday has been a trending topic on Twitter, and we have reached millions of people across social media.
Could you tell us your family’s story?
Jennifer and I were married in 1995. We spent the first several years of our marriage getting to know each other. We enjoyed nights on the town, traveling, and just being together. We always thought that when we were ready to start our family it would come easily.
Unfortunately it didn’t happen that way for us. After six years of hope and frustration, the typical infertility procedures had still proven unsuccessful. Still determined, we met a caring a compassionate doctor, Dr. Arthur Wisot, and after our first round of IVF we learned we were finally pregnant!
After the first ultra-sound the doctor was confident that we had one baby but he thought there might be another. The next ultra-sound confirmed it. We were expecting twins! Everything was progressing nicely until about 22 weeks when Jenn developed pre-eclampsia. Jenn was put on immediate bed rest. Jenn did everything she could but unfortunately with her escalating blood pressure the neonatologist said we had to deliver immediately. Our daughter and son, Reece and Graham, were delivered on Thanksgiving day, November 23, 2006 by emergency C-section at 25 weeks and 3 days gestational age.
After Jenn’s discharge from the hospital, she remained on bed rest for six weeks. I spent day and night at the NICU and took Jenn back and forth, as she was only allowed to be there for brief periods.
Graham had an incredibly difficult journey but he was so strong, such a fighter. Our intuition knew that his time with us, during this lifetime, would be brief. Graham was with us for only 45 days, and we are grateful for every moment.
When we look back, Graham had only one truly good day. It was the one and only day that Jenn was able to hold him. He was still on a ventilator at the time. Jenn and I remember our nurse telling us at least three times that day, “Graham definitely knows that his Mom held him today. He definitely knows.” It turned out to be just days before we had to say good-bye.
Family and friends from around the country joined us to celebrate Graham’s life. There were at least a dozen NICU staff in attendance as well. Having them there with us meant the world. We released 45 blue and white balloons at the service to remember Graham.
Each January 7th family and friends join us as we honor Graham’s life by releasing balloons. While Graham isn’t with us today in body he will be with us forever in spirit.
So, can you tell us a little bit more about what it means to be a preemie?
This can vary depending on the resource but a preemie is typically defined as a baby born before 37 weeks.
What’s the difference between a preemie and a micro preemie?
The gestational age can vary depending on the resource but often a baby born 26 weeks and before is a micropreemie. Those born after 26 weeks are a preemie.
Are there certain things that we can expect based on how early our baby was born?
No premature baby is the same. Some have a very “typical” NICU stay depending on their gestational age and some have a very long NICU stay full of complications. Some babies born early have no long-term disabilities and some have multiple disabilities. Every baby is completely different.
Is the developmental timeline the same with premature babies?
This depends on the gestational age and NICU course of the child. The closer to the due date at birth, the more likely the child is to be closer to their developmental timeline. The earlier the gestational age at birth, the farther from the developmental timeline the baby will be. Also, the developmental timeline is going to be followed based on the child’s adjusted age – not their actual age.
What kind of health problems can premature infants have?
Premature infants can have a myriad of health complications that include, but are not limited to, hearing impairment, gastrointestinal concerns, lung development concerns, brain development concerns, developmental delays, vision impairment, thyroid imbalances, and more. On the contrary, premature infants can often experience no health complications in their life.
Please stay tuned for part 2 of our interview with Nick.
