TELLURIDE – Three Telluride women have been meeting together regularly for the last four years, not just because they are great friends, but because they all have something in common. All three lost their newborn sons within hours of their births. Now, Jen Mann, Lara Young and Shawna LaBorde are extending their support to others who have experienced the loss of a baby, or of a pregnancy, with the formation of PAIL, their Pregnancy and Infant Loss support group, which will meet monthly starting Wednesday, June 8. “We want to support moms and dads who have lost babies, no matter how long ago,” says Mann. Mann’s son Clovis was born on Dec. 18, 2005. She'd had a normal pregnancy and a normal delivery, but immediately after birth it became clear that her baby could not breathe on his own. The neonatologist at St. Mary’s in Grand Junction gave Clovis a dismal prognosis. Mann and her husband decided to take their son off life support so they could hold him and say goodbye. Clovis died nine hours after he was born. The couple elected not to do an autopsy, but rather donate his heart valves to another baby. “We felt really good about that,” she says, “but there are still lots of unknowns” about his death. After Clovis died, Mann felt she had no one to talk to. “I felt like a leper,” she says, “isolated, like I had a contagious disease.” So she found herself surfing on the Internet for support groups and discovered nationalshare.org, a pregnancy and infant loss organization that provides resources for parents dealing with the tragic death of a baby through pregnancy loss, stillbirth, or in the first few months of life. Once there, one woman responded to Mann’s feelings of isolation by saying, “Welcome to the leper colony.” She no longer felt alone.
Through Share, Mann was able to connect with others experiencing similar grief, and has a friend she maintains contact with to this day. But within a year she also had a friend in Telluride to share her grief with. LaBorde lost her son Tyson, who was born in Grand Junction, on Aug. 13, 2006. Like Mann, she had a normal birth and delivery, but Tyson had a heart condition that was not detectible until the umbilical cord was cut and his heart rate plummeted. “He lived only a few hours,” she says. “For us, there wasn’t a lot of time, or choice… The nurses were very considerate. They all sent cards, put memories down, cried with us. One piece I regret, though, is they didn’t tell me that I had all the time I wanted” to be with Tyson. Barely a month later, Young gave birth to Taz, on Sept. 10, 2006 in Montrose. Although she had done a significant amount of pre-natal screening, the fact that her son had trisomy 13, a rare genetic condition, went undetected by her OB-GYN. When Taz was born, his heart was failing and he had an obvious severe genetic condition, but no-one at the hospital could tell Young and her husband exactly what was going on. They were immediately air lifted to Grand Junction, where they met with a neonatologist, a cardiologist and a perinatologist, but none gave the couple direction as to the next steps they should take. Finally they were flown to Denver Children’s Hospital where they met with a geneticist who explained Taz’s condition and prognosis. From there they were able to make the decision to take Taz off life support and spend his last moments together as a family. “Lilly (Taz’s almost 3-year old sister) wanted to give him a bath. Sing him ‘Twinkle Twinkle Little Star.’ Change his diaper,” recalls Young, tearing up. They also had professional photographs taken of Taz through a free program called Now I Lay Me Down to Sleep. Back home, Young’s meetings with her friends Mann and LaBorde became an integral part of her healing process. Not that you ever really heal from losing a child. “Four-and-a-half years later, I’m not debilitated by it,” says Young. “But it gets worse before it gets better. And it comes in waves.” One thing all three women agree upon is how important it is to have actively supportive friends when you’re dealing with the death of a baby. “It’s important that you have people that show up for you, that say, ‘How’s your heart today?’” says Mann. Hugs are great. Food and groceries are extremely helpful. But, “No flowers!” – they all insist. Consistency is also very important. If you call once and there’s no answer, call again. Keep the invitations coming. But only offer support that you can handle, they say. For Mann, her first Mother’s Day was especially difficult. She took a run with a good friend that day, who helped her turn her head around by telling her she needed to start honoring Clovis. “That became my mantra, ‘Live to honor him; don’t check out,’” she says. After the loss of their boys, all three women have gone on to have strong, healthy babies. But with their next pregnancies came a lot of fear and caution, which translated into lots of questions for their health care providers, lots of pre-natal testing, and a determination to have the best possible birth environment for their babies, short of traveling to Children’s Hospital in Denver. All three had their next babies at St. Mary’s in Grand Junction with midwife Janet Grant. “She’s a rock,” says LaBorde. “Janet should train everyone” involved with pregnant women and birthing babies. Through PAIL, Mann, Young and LaBorde hope to raise women’s awareness that they can take control of their pregnancy health care choices. “Ask the questions,” says Young. “If you can walk away from something and say ‘I’ve had the best standard of care’,” you’ve done everything you can. “You don’t want to say, ‘If only I’d had that information.’” “We’re saying all of this with hindsight wisdom, of course,” says LaBorde.
“Yes,” agrees Mann, “we’re professional baby-loss mamas, but we’re not professionals.” Whether seeking pregnancy advice or support for a miscarriage or the loss of an infant, one thing PAIL promises is a safe, sacred place to talk about your grief, hopes and fears. Together they’ve dealt with one-year anniversaries, helping their older children deal with their own grief, and been there for each other’s subsequent pregnancies and births. “It’s been amazing,” says Young. “We’ve wanted to share this support with others for a long time. You just need to know that you’re not alone. Welcome to our leper colony.” PAIL is aiming to meet once a month. Their first meeting is planned for Wednesday, June 8, 6-8 p.m. at the Wilkinson Public Library. For more information, or just to talk, contact: Jen Mann, 728-3647, firstname.lastname@example.org; Lara Young, 708-0308, email@example.com; or Shawna LaBorde, 708-3774, firstname.lastname@example.org.