Jennifer Miller remembers the exact moment she knew that her unborn baby girl was in trouble.
True, her obstetrician had hinted that something looked amiss during the 20-week sonogram, but Miller hadn’t felt particularly concerned. She was too wrapped up in what she expected the probe to tell her — that she was, in fact, carrying a third son.
“I am the mother of two boys, and I just knew this was going to be another boy,” she recalls with a laugh. She had even picked out a name for him. When this “he” turned out to be a “she,” however, all Miller felt was shock. “My husband kept looking at me, saying ‘I thought you’d be excited!’ But I was just so caught up because it wasn’t what I expected.”
In fact, Miller says she was so bowled over by the news that it barely registered when the doctor suggested that they might need to run some additional tests.
Later, when Miller was home with husband Nate and their boys, the OB’s office called. And that’s when her world changed. “When they said, ‘We’re going to go ahead and fit you in tomorrow,’ I thought, something’s really wrong.”
And it was.
‘Hard to believe that everything was so broken’
Miller never intended to become a blogger, and she never dreamed she’d become the keeper of an online journal that’s racked up as many as 120,000 hits. She was aware of the blogosphere and even frequented a few favorites. But writing her own had never occurred to her. That is until the January day in 2006 when her OB’s office called.
The official diagnosis: Left-Side Congenital Diaphragmatic Hernia, commonly shortened to simply “CDH.”
The condition arises early in pregnancy, at a time when all of a fetus’ organs are forming. It starts when a hole develops in the diaphragm, which is the flat muscle that separates the chest cavity from the abdominal cavity. “The result is that abdominal contents go through the hole into the chest,” says Dr. Stephen Megison, a UT Southwestern surgeon at Children’s Medical Center Dallas whose practice involves CDH babies. (Although Dr. Megison did not consult with the Millers.)
That means organs like the intestine, liver, spleen or even the kidney can be situated in the same space as the heart and the lungs. This can cause two problems with lung development, reports Megison: “One, is less total lung tissue. This is called pulmonary hypoplasia. Two, the blood vessels in the lung are irritable and can squeeze shut, decreasing blood flow to the lung. This is pulmonary hypertension.” Both situations can result in potentially life-threatening breathing problems once the baby is born.
The occurrence rate of CDH is about one in 5,000, says Megison, and the cause is unknown. Miller says she’d never heard of it until she found out her baby had it.
“People always say, ‘I don’t care [about gender], I just want the baby to be healthy,’ but you never really understand what they mean until there’s something wrong,” she stresses.
“There was nothing abnormal about my pregnancy at all. It was so abstract, so hard to believe that everything was so broken.”
Once the news settled in, Miller grappled with having to “tell people over and over and over,” she recalls. “I was just done talking about it.” A friend suggested that starting a blog might be a more efficient way to share news. Miller, who was by then getting a sense of what kind of “roller coaster” the entire family was about to board, regardless of the outcome, agreed.
Jan. 8, 2006: NEVER did I think I’d have a reason to “blog” … but here I am with the crappiest reason of all — to share medical information … I could go on with all the revelations we were having a girl brought us those first 24 hours before we knew she had a serious birth defect, but my focus tonight is to get everyone on the same page about her condition … I’m not doing this to avoid speaking to any of you … I just don’t want to have to keep repeating our dr. visits, research, plan of action, etc. every time I talk to you. I’ve already found that I’ve forgotten who I’ve told what and don’t want to bore anyone with resharing something, especially when everyone is being so nice to us right now that they wouldn’t stop me and say, “yeah, already told me that Jenn!” I also want to avoid incorrect info being passed along; at least if it’s wrong from here, only I’m to blame! I welcome ALL of your questions, input, suggestions, research, etc. — please don’t hold any of that back. I wouldn’t have shared this with you if I didn’t want you to be a part of it.
Over the coming months, a pregnant Miller underwent a series of tests, including ultrasounds, echocardiograms and MRIs, each revealing its part of the larger picture: The hole in her daughter’s diaphragm was relatively small with some displacement of the stomach and bowel; her heart was pushed over to the right side and only slightly compressed; and there were no chromosomal abnormalities.
In the realm of CDH, this was a good prognosis, but there were still no guarantees. Baby Girl Miller, as she and Nate called the baby in the days leading up to their agreement on a name, still had to survive being born. Then she’d have to do well enough outside of the womb to be eligible for repair surgery to patch the hole and put the organs back into the proper position. Once “repaired,” she might still face a multitude of issues involving musculoskeletal development, digestion, breathing and cognitive and physical development.
Gradually, Miller’s blog morphed from a purely information-dispensing tool to a form of therapy for her. “It was my one place to get it all out there,” she says. As family and friends started passing the blog address along, Miller says countless numbers of people, even complete strangers, reached out to e-mail words of love, hope and encouragement.
“The support was overwhelming,” she recalls. At one point, there was even a mosque in India praying on her behalf. “That’s 5,000 people praying at one time for my baby girl — the way that feels, you don’t even know.”
Miller’s blog also helped connect her with other moms facing the heartbreak of CDH. By March, she had linked up with five other women — in Dallas, Houston, Oklahoma, North Carolina and Toronto — all expecting to deliver babies within about 10 weeks of each other. “We’re all really close and all six of us ended up having blogs,” Miller notes. Many of her posts incorporated news of these new friends and their struggles. Of these six babies, only three are alive today.
Jan. 30, 2006: [L]ast week was probably my toughest so far. I just got WAY overwhelmed by what we’re facing, not the big picture, but the details. Seeing those kiddos in the NICU on vents, not dressed or swaddled, with a jillion tubes coming from them; hearing how the delivery will most likely go (her intubated as the cord is cut, whisked away to have her chest x-rayed & echoed, brain scanned, central line inserted — all without us close to her); understanding that I may not hold her for at least days, maybe weeks; that she may never breastfeed, that I may not hear her cry for days, weeks, months (vent babies don’t cry until sometime after extubation); that all this isn’t worst-case scenario, it’s average … the average CDH kiddo is in the NICU for 3 months. … I’m better now and focused on hoping for the best as I’ve gotten the most info I can on what can happen and want to spend the rest of my pregnancy hopeful instead of scared. The discussions Nate and I have had to have are mind-blowing at best. I feel good about the decisions we’ve made though in case the worst happens.
‘We didn’t tell him that she might die’
Audrey Jane Miller was born May 5, 2006. Miller was discharged two days after a scheduled C-section. It would be another 60 before Audrey could leave the neonatal intensive care unit and come home to the pink nursery her parents had prepared for her.
For most of those first two months, Miller and her husband followed a familiar pattern. They’d get up in the morning, have breakfast with their sons, then leave to spend the day at the hospital. Late afternoons they’d return for bath and bedtime; then it was back to the hospital for the night shift.
Their youngest son was only 21 months old when Audrey was born, but the situation definitely took a toll on their 5-year-old. “We didn’t tell him that she might die; we just told him that we knew the baby in mommy’s tummy — Audrey — was going to be very sick, that he wasn’t going to be able to hold her and he might not be able to see her, but that everything was going to be OK,” Miller says.
Nate took the month off and Miller’s father moved in to lend a hand. That, combined with the help of Miller’s mother, a strong group of friends and neighbors, as well as summer camp, kept the family kept going. “We were a machine,” Miller jokes.
Audrey’s first major hurdle after simply staying alive was the repair surgery. “During her first two nights, we were told probably four times it might be time to take her off [life] support … but one random, crazy thing would happen, and she’d start to improve or stabilize,” Miller says. “By about seven days after her surgery, I knew we were going to bring her home.”
For Nate, the revelation came a bit later, in the form of a promising chest X-ray. “I don’t remember the exact day, maybe it was May 18 or 19, but I was home with a sinus infection and he called to give me an update. All of a sudden, he wasn’t there — he was sobbing, ‘Jennifer, she’s going to live.’”
Indeed Audrey began to slowly, steadily improve. There were setbacks — emergency surgery for a bowel obstruction in August 2006 and two hospitalizations for chronic lung disease — but Audrey, by now a fighter of the first order, survived. And through it all, Miller kept blogging (and fighting, herself). She not only dedicated words to her own daughter, but she continued to devote her efforts, posting photos, links and sending personal prayers, to other CDH parents facing the same situations — and worse.
May 29, 2006: We are finally off life support measures along with all meds and she’s doing great; we couldn’t be more thankful. Speaking of thanks — what a contribution all of you have made. I know that my precious girl has a will to match no other. But, I also know that the power of everyone coming together for her has carried that will to the greatness she has and will continue to achieve. Your support has lifted us up. The comments on here alone bring us such peace and joy, and I can’t even begin to list the amazing things people have done for us in the past month … Please continue to pray for the other CDH families … To my CDH friends, please know I think about each of you daily.
‘You’d never know she’s a special needs kid’
Audrey turns 2 this month, and she is, for all intents and purposes, a healthy toddler. Or, as her mother describes her with a laugh, “a crazy toddler!” Thanks to an intensive first year of physical therapy, she hit the big developmental milestones more or less on time, sitting up at seven months and walking at 15.
Like nearly all CDH toddlers, she’s still tube-fed, but Miller has already dropped her from four daily feedings to three, and Audrey’s doing well with chewing and swallowing (especially when it involves candy). Her four-times-a-week therapy appointments have streamlined to a single weekly visit, and Miller boasts that if you saw her energetic, saucer-eyed, blonde-topped kid on the street, “you’d never know she’s a special needs kid.”
Nov. 7, 2007: The best birthday present ever … “She has gone above and beyond any expectation I had of her!” So said Audrey’s pediatrician on her 18-month well visit which also netted us GREAT growth on the chart … She’s eating more orally now too, although I’m hoping that typing that doesn’t jinx it! We’ve even started a trial at weaning off tube feedings — we’ve dropped one, and if she maintains her weight (or gains!) for 2 weeks, then we’ll go forward … The only negative of the appointment besides shots was her restrictions on activities — we thought we’d get to finally join a Gymboree class or something but with the new info about her left lung she said she’d feel better if we had a cautious winter. Next year, we’ll be free though!
Meanwhile Miller looks forward to the day when her blog morphs from medical drama to simple stories about the funny stuff that happens with three kids. But she plans to keep writing and archiving all of her previous posts. For she knows that her story, along with the promise of a normal, everyday life, holds a world of inspiration for families facing the horror of CDH.
“There are way, way, way too many stories about CDH babies who die, but I want parents to see that these babies can live and that they can have normal lives,” she says.
She was struck by one CDH baby blog in particular. “Their baby was in the hospital for six months, and I just want to say to them, ‘I know you don’t believe me, but in a year, you won’t believe how easy it is — just go to my blog and see. I am blogging about Audrey standing on top of my kitchen table!’”
On a recent visit to the pediatric pulmonologist, Miller asked about Audrey’s long-term prognosis for life with only one lung. “The human body is an amazing thing,” the doctor told her. But he cautioned that Audrey probably wouldn’t grow up to be a marathon runner. “Then I laughed,” Miller reveals, “Because I know she probably will.”
Update 1/11/13: Audrey turns 7 this year. She and her mom have been active in promoting CDH awareness.
