Jennifer and Patrick McGraw of Milwaukee, Wis. were thrilled to learn in December 2010 that they were expecting a baby the following September. Jennifer, like many other first-time moms, scoured the Internet for expectant mom info, and found a group of women with babies due in the same month on the pregnancy and parenting website thebump.com.
The “bump group” grew as due dates neared, and like many other online support groups, the members relied on each other for support and information, chatting about their growing bellies on a daily basis.
Two years later, Jennifer’s birth group, the September Sweet Peas, has created a donation drive and Internet presence with the goal of helping the McGraws afford genetic testing and therapy that might enable them to bring home a healthy baby after losing two newborn sons to the same mystery genetic disorder in as many years.
“The thing about Jen is, once you get to know her it is so easy to rally around her and do anything you can to help her,” Elysha Rice of Milwaukee, a fellow bump-group member and friend of the McGraws, wrote in an email last month.
The worry started when Jen and Patrick went to the doctor for a routine 20-week ultrasound with their first pregnancy in 2011.
“During the time we were all having our anatomy scans, Jen posted a message on the bump sharing that the doctors had identified some concerns with her baby—those included his cleft palate and omphalocele [a protrusion of the intestines through the abdominal wall that can often be a sign of a birth defect, according to the National Institutes of Health].” Rice wrote in the email. “They had an emergency amnio, though that came back without any additional info.”
Rice said the women in the group waited and worried with Jen through the remainder of her pregnancy.
“Once Dylan was born, most of the board’s info came through others who were exchanging texts with Jen,” Rice wrote in the email. “They did some initial genetic micro array testing on Dylan, but micro array can only test for known genetic abnormalities. Jen and Patrick have been told that this is believed to be a recessive genetic abnormality—that the chance that both of them have it is one in a million. They were also told that the fact that their pregnancy with Dylan progressed past first trimester was unlikely. As they have never seen this particular combination of defects before, they are currently calling it ‘Dylan Syndrome’.”
The McGraws spent weeks in Children’s Hospital of Wisconsin with Dylan and were able to take him home for a short time before he died.
Eulogizing his son, Patrick thanked Dylan for making him a father.
“What we are so grateful for now, are the things Dylan would teach us about himself, each other, and ourselves. Dylan showed us life and love in the absolute purest form,” the eulogy, posted at the Devoted2JenandPatrick website, reads. “Because of Dylan, I am forever a proud father. He is forever our sweet boy; our miracle.”
The McGraws threw themselves into helping other families by organizing a team for the March of Dimes March for Babies in 2012 and raising more money than any other family team in Wisconsin. Their “Devoted to Dylan” team was ninth in fundraising among family teams nationwide.
In late 2012, expecting again, the McGraws were told that their second baby boy would have many of the same issues Dylan did, but doctors couldn’t tell them why. Noah McGraw was born last month, and died the same day.
“[The doctors] wanted to do some further studies, but insurance didn't cover it,” Rice wrote. “Now that they have unfortunately discovered that Noah has similar defects, the genetic team is working to try to get the testing covered by insurance, but it has not been approved at this point.”
Rice said the specialists likened the search for the gene that’s causing the fatal abnormality in the McGraws’ babies to trying to find a single typo in a library.
“It's like trying to find two interchanged letters in one word on one page of one book on one shelf in the entire library,” Rice wrote.
Jennifer McGraw blogged in January about the expense of the testing (which requires in-vitro fertilization treatments, also not covered by health insurance) and her amazement at the generosity of her online mommy friends.
“Out of the 300-plus of us, four of us lost our children. On Mother's Day, we were sent flowers and a cookie/brownie care package to get us through the day and to remind us that we are mothers. Regardless of where our babies are,” Jennifer wrote. “[Now] they want Patrick and I to have a biological take home baby. They organized a fundraiser to help us pay for that possibility. … It is very humbling to think that people are that moved or inspired by you and your story that they want to help you, or share your story. Thank you from the bottom of my heart for helping us.”
Rice said the decision was easy.
“I moved to Milwaukee from Boston when my son was 3 months old, and even though she had lost her own son so very recently, she embraced my whole family and has done everything she can to make us feel comfortable here,” she wrote. “My son loves her, and they are special friends. She has helped other mothers in our group who have lost babies, and stayed to support those of us who still have ours with us.”
Rice said a handful of the Sweet Peas brainstormed the idea of the fundraiser, and thanked Jillian Haley of Sarasota, Fla., Kimberly Firestone of Sinking Spring, Penn. and Kim Leutenegger of Milwaukee for their help in spearheading it. She invited anyone interested in reading more or donating to the McGraws to visit the group’s Facebook page.
“All we want is for Jen and Patrick to bring home a baby,” Rice wrote. “While it will not take away from the heartbreak of saying goodbye to Dylan and … Noah, as we all know, there is nothing that compares to watching your babies grow up and discover the world.”
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