Mar
13
2011

The Tiny Footprints Guild, the journey of two mothers

I was lucky enough to meet two extremely strong local mothers who have given birth to preemies, one who eventually took her daughter home, one whose son became an Angel.  These two amazing women started a local guild, the Tiny Footprints Guild in support of the Global Alliance to Prevent Prematurity and Stillbirth.  I’m proud to be able to share their story.

History

Each year, around the globe, an estimated 13 million babies are born too early.  In the United States, this represents one in eight live births. Additionally, preterm birth is the leading cause of newborn death, worldwide, and 3.2 million stillbirths occur each year. The loss from stillbirth presents great emotional and physical hardship for women and their families and is often linked to maternal death.  For preemies who survive, it is well documented that babies born prior to 37-weeks are at greater risk of infection, cerebral palsy, and respiratory, vision, hearing and developmental problems.  The full magnitude and many causes of preterm and stillbirth remain unknown and the questions of ‘why’ often go unanswered as families are left to deal with their grief, alone.

Yet, as dramatic as these statics are, the tragic losses and challenged life scenarios are rarely the subject of research or considered high priority in the development of public health policies or goals.  The Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) is dedicated to supporting research and advocacy for this vital, yet often ignored population. 

As part of its mission, GAPPS is building a significant global collection of prospective data and specimens linked to phenotypic data from pregnant women and newborns. A model for enhancing research capacities, GAPPS is an initiative of the Seattle Children’s Research Institute.  Located in the center of a thriving biotechnology hub that includes the University of Washington, the Fred Hutchinson Cancer Research Center, the Seattle Biomedical Research Institute, the Bill & Melinda Gates Foundation, and more than a dozen research organizations, hospitals, and nonprofits engaged in discovering innovative solutions to health problems, worldwide, GAPPS leads a collaborative effort to increase awareness and accelerate research and interventions that improve maternal, newborn and child health outcomes.

Tiny Tots

The Tiny Footprints Guild is a non-profit guild of Seattle Children’s Hospital. Founded by two mothers of premature infants, the Guild helps raise funds for GAPPS while acting as a champion for parents, babies, and families affected by the prematurity or stillbirth experience.  Through fundraising and by raising community awareness, the Tiny Footprints Guild encourages the development of stronger data, tools and resources to support vital GAPPS programs.

Our ‘tiny’ babies deserve the best chance they can get in life and prematurity puts vulnerable strikes against them they don’t deserve.  GAPPS and Seattle Children’s are leading the collaborative, global effort to increase awareness and accelerate the innovative research and interventions that will improve maternal, newborn, and child health outcomes.

The name ‘Tiny Footprints’ is in honor of all the tiny feet that are here with us now as well as those who are looking down on us from above.

Mission:

The Tiny Footprints Guild is a non-profit guild of Seattle Children’s Hospital. We are dedicated to raising awareness and funds that support the work of GAPPS (the Global Alliance to Prevent Prematurity and Stillbirth) in its research and advocacy for premature and stillbirths and to champion those born with ‘tiny footprints.’

Gina Hjort

The Tiny Footprints Guild was founded in memory of my son, Ryan John Franco Hjort, who was born early, at 28-weeks.  Born on October 14, 2007, Ryan died in the Neonatal Intensive Care Unit (NICU) of Seattle Children’s Hospital on November 27, 2007. Our second child (our beautiful son Evan was born in 2005), Ryan’s short life taught me a great deal about sadness, loss, and love.  Three years after his death, I was approached by a mother I met at the NICU, Erica Gower.  Erica asked me if I wanted to start a Guild to support the work of GAPPS (Global Awareness to Prevent Prematurity and Stillbirth).  I immediately jumped at the chance.  I felt Ryan’s brief stay on earth was meant to guide me and give me purpose.  Creating the Tiny Footprints Guild is Ryan’s gift to me.

I want to give all those parents who have lost a baby a shoulder to cry on, help them discover what to do next, where to go, and find a support group that can help them get through the unbearable. I want these parents to know they are not alone; that this wasn’t their fault and there is someone there for them who has experienced a similar loss and will do everything in their power to help them get through. My son, Ryan had strength and he is there every day for me. Tiny Footprints will be there for all families and parents.

Erica Gower

My work with the Tiny Footprints Guild is dedicated to the courage and strength of my second child, Katie Gower who was born on (date) at 31-weeks.  Just five weeks shy of what the doctors consider ‘normal,’ Katie was only 3 lbs, 11 oz. when she arrived nine weeks ahead of schedule.  The result of placenta preevia (internal hemorrhaging), the birth put both Katie and I at risk.  A thoroughly different experience from my first delivery (our son Max was born in (date) at full term), nothing could have prepared my husband and I for the experience of the NICU at Seattle Children’s Hospital.  The first time I saw Katie, our tiny daughter was hooked up to beeping machines.  Five other very fragile, very tiny babies were in the sterile, white room with her.  The stress was go great, I actually passed out.

I met amazing people during our time in the NICU, including my friend Gina Hjort. Some babies lived, some fought for their lives and others, like beautiful Ryan Hjort, lost his fight in front of our eyes.   

Our time in the NICU was difficult and even though I was surrounded by other parents going through the same thing, I felt so alone. I started the Tiny Footprints Guild as part of a personal mission to support others going through the premature experience. Through our work, I hope to let others know they are not alone and that there are other parents out there who understand what it feels like to see your most precious treasure laying there helpless, just trying to breathe.

Tiny Footprints Guild on FB, if you’re in the Seattle area, consider joining the Guild, members are always needed!

Global Alliance to Prevent Prematurity and Stillbirth on FB; Online and on Twitter

About the Author: Julie of IAPT Howard

6 Comments + Add Comment

  • Amazing story! If there is one thing I can wish for is for other NICU parents know they are not alone. I didn’t find support until recently but I did feel alone, helpless, scared and guilty as I felt it was all my fault. Now I’m so glad I found it a preemie thing on FB to help me get through the ups and downs we face with preemies during development.

  • It wasn’t until I found IAPT did I realize I wasn’t alone & that there were support groups out there for parents dealing with a baby in NICU. Other than a social worker & a few of the Nurses I had no one to turn too. It’s do nice to know there are others out there that gave/are going thru what I went through.

  • This is a great story. I thought readers might also enjoy this success story of a NICU baby: http://blog.kennedykrieger.org/2011/02/exceeding-expectations/

  • Thank you Julie for writing about our guild and story. It is so amazing to me how many of us preemie and stillbirth parents are out there who felt so alone. But in reality, we are all right here to help each other out.

    I applaud what you do and helping being an advocate and voice for prematurity, thank you.

  • Thank you Julie for writing our story and talking about our guild. It is truly incredible how many preemie and stillborn families are out there and have no one to run to because of their guilt and feeling alone. We are here for everyone and we want to be that voice and advocate for those parents. Thank you for spreading the word….

  • My granddaughter was born at 1.3 ozs 3 months early…she is thriving and now 15 months old. Not yet walking but a full crawl…My question is about testing, and therapy offered to help preemies if they need it. This would be for the state of Washington.

    Thanks for any info…

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