November is Prematurity Awareness Month & according to the March of Dimes, 1 in 9 babies is born prematurely in this country. That figure really surprised me but I’m not sure why it did. I went into labor at 35 weeks with my oldest, for no reason that anyone could figure out, and she was born hours into the first day of my 36th week. We were tremendously lucky that she was born healthy and was able to go home with us on time but we all know someone who has been touched quite seriously by prematurity. Personally, I have a few very good friends who each have lost a child before going full term and one who had a premature baby a few months ago. I would imagine we all have been touched by prematurity at some point.
Today I’m proud to share with you an interview with Tiffany Bowen. Tiffany is a local DC area mom who also happens to be married to Redskins Captain Stephen Bowen. Despite having all the resources available to her during her pregnancy with twins Stephen and Skyler, Tiffany faced a tremendous loss. My interview with her today is a recap of our totally honest and really insightful conversation over a great lunch a few weeks ago.
Eight years into parenting, I can tell you one thing for certain and that is: I am quite certain that it’s Murphy’s Law for Moms that the shit hits the fan when your partner is traveling. In Tiffany’s case, she abruptly went into labor with her twins at 24 weeks, with a 2 year old at home, when her husband was out of town.
During our lunch, Tiffany explained that 24 weeks is the first week a baby is viable outside the womb and when she went into labor, she was given the option of doing anything to keep her babies alive or letting nature take its course.
Just consider even facing that decision for one minute.
Tiffany wanted to do what could be done to save the lives of her twin baby boys and so her path began. In the end, she lost one son, Skyler, after 10 days and her other son, Stephen, is now a happy, thriving two-year old. While this was happening, she had a two-year old daughter at home. She spoke so candidly and openly about this experience.
As I drove to our lunch, I considered many of the hurdles and challenges facing parents who have a very premature child. Every story and experience is different but I had to imagine that many of the feelings that come with this horrible experience must be the same. One thing that struck me must be this overwhelming feeling of guilt or responsibility facing a mother in early labor, even though others can look in and recognize it is beyond her control. I asked Tiffany about this. She said she of course felt guilty and was searching for answers, noting that she never drank in pregnancy, she took care of herself, and she had access to excellent medical care and despite all of it, her body still went into labor. When I asked her what advice she has for other mothers in this situation, she quickly recommended counseling for both parents and even sometimes for a sibling if they’re old enough. She also said that if you are spiritual, you have to pray. In the end, there is no explanation for why her body went into labor and there can be unexplained causes of prematurity. I would think not having answers can make a difficult situation even more stressful.
Then I asked her what it’s like for her when people ask her how many kids she has, something else I considered on my drive to our lunch. I wondered what I would say and how just being asked a simple question must surely be a painful reminder for many many families of a horrible loss. She noted that she still struggles but when asked, she responds that she has three kids and one is deceased. She said he lived for 10 days before he died, she wants to honor his time. Knowing that others can be awkward and unsure of what to say when faced with someone in grief, I pointedly asked her about that experience and she was very honest and said it was horrible for her when people acted like it didn’t happen or suggested that one kid replaces another with the “Thank God you had twins” comment or “God Knows Best.” She said another comment that she doesn’t care for is “God needed an angel.” Her response? “I needed my child more than God needed an Angel.”
Bottom line, Tiffany’s advice is the best thing you can say is “I’m here for you, what do you need” or “I’m so sorry this happened.” And for family and friends to insist on helping, even if it means dropping off meals.
I asked her about her marriage and how stressful this must have been for her and her husband. Again, her honesty amazed me. She noted that everyone doesn’t grieve the same way and said her husband cried once and she wanted him to keep on crying. She said for a few months, she couldn’t listen to TV or music, she just wanted silence. One day, they were driving somewhere and her husband turned on the radio and she was furious, she couldn’t believe he could just turn on the radio but her way of grieving just was not his way. In addition to losing her son, she also lost her Grandmother and her mom to muscular dystrophy, in the span of just a few months.
It’s what Tiffany has since done with her grief that I think deserves some real attention. While she was in the Intensive Care Unit of the hospital with her sons, she began to learn that many people can’t afford to bury their babies and she was struck with the very real pain that mothers must feel if they leave the hospital without their baby and they can’t even leave with the baby’s remains. It was news to me that there are mass cremations for premature babies when the parents cannot afford a burial. Tiffany and her husband have since started Skyler’s Gift, a non-profit organization dedicated to helping support families during this time of loss by paying for the baby’s funeral.
Tiffany explained that though it’s been around for just over a year, they’ve already assisted with the burials of 30 babies and were March of Dimes ambassadors last year due to the amount of money they raised for the organization. She can rattle off chilling facts and figures, like the average cost for a baby’s burial is $1500 and large companies in the United States want to give grants to organizations helping babies but for babies who survive, not for babies who have died, meanwhile the health and viability of Tiffany’s important work through Skyler’s Gift ultimately relies on grants from organizations, along with donations from individuals.
Tiffany is a passionate advocate for families facing loss in prematurity and for prematurity research. The way she has channeled her grief into action is really inspiring. You can read more details about her story here. November 17 is World Prematurity Day and while organizations around the country work to draw attention to this issue, I hope you’ll consider donating to Skyler’s Gift. Every single bit helps.
What spending time with Tiffany does is remind me of the power of a mother and how motivated we all are to do whatever we can to protect our babies. I’m inspired by her strength and passion. You can follow Tiffany on Twitter here or even better, support the organization by attending the second annual Skyler’s Gift Bowl-A-Thon in downtown DC at Lucky Strike in May. By purchasing a ticket, you’ll be supporting Skyler’s Gift and have the chance to bowl with NFL players. This is a great way for football fans to hang out with some of their favorite players while supporting such a great local cause, including individual ticket prices or corporate donations.
Thanks to Tiffany for her honest and tireless work for families across the country.