As Georgianna Garry traces her finger over the blurry photo from her 22-week ultrasound, she wonders aloud why she hadn’t noticed the shape of the baby’s head right away.
She is in her seventh month of pregnancy, a time that should be filled with the joys of preparing the nursery and picking out names.
Instead, she sits on the floor of her family room, looking at the picture, telling the story of what happened that day.
It’s late June, and she is tan. She has just returned from the pool with her other children, Mary Kate, almost 4, and Seamus, 2 1/2, and her sister Kathleen and nephew Sammy.
Except for her round, protruding belly, she is muscular and fit — still teaching aerobics just weeks before her due date.
She glances up from the picture and repeats the words that will become her mantra during the weeks leading up to the baby’s birth, “Please, God, just give me 10 minutes.”
Then she breaks into a wide grin, thinking back to the day of her ultrasound, and says, “I took my mom to cheer her up!” And she giggles.
Georgianna’s mother, Marguerite Diemert, is fighting breast cancer. So Georgianna and her husband, Dan, decided to take Marguerite along and let her find out the baby’s sex, even though they wanted to be surprised.
It was a boy, the straight-faced tech secretly told Marguerite. She gave the pictures to Georgianna for a keepsake.
As Georgianna recalls the day, she says the ultrasound seemed to go just like the ones with her other two children. Throughout the day, she looked at the pictures in amazement, just thrilled to be 22 weeks pregnant.
Until the phone rang a few hours later: It was her doctor, Jean Reinhold.
“I thought she was going to tell me it was Down’s,” Georgianna says.
At 41, Georgianna knew she had a greater chance of having a baby with Down syndrome. As lifelong Catholics, she and Dan were prepared to raise a special-needs child. In fact, they had decided against doing an amniocentesis, a test usually recommended for older mothers that detects a number of chromosomal and genetic diseases.
But they were in no way prepared for what Dr. Reinhold told them: Their baby had defects that were “incompatible with life.”
The baby had something called trisomy 18, and one of the key characteristics is a strawberry-shaped head, easily detected on an ultrasound exam. Trisomy 18 babies rarely live through the birth, and if they do, they usually die soon after.
Georgianna looks at the picture again. Now she can see the baby’s head isn’t as round as the other two had been.
Why hadn’t she noticed it right away?
Georgianna Garry — known as “George” to her close friends — is part Carol Burnett and part Pollyanna, hysterically funny and endlessly optimistic. If you were blindfolded in a crowded room, you could find her by just listening for her easy giggle.
Friends turn to her whenever they need to boost their spirits. She runs a hair salon in Willoughby with one of her best friends. With each pregnancy, she has taught aerobics at the YMCA well into her ninth month, and plans to with this pregnancy, too.
She first met Dan when they were 7. They lived only a few streets apart and grew up in the same church. Dan, with an adventurous spirit and positive outlook, took off to live in Wyoming and Australia, work the salmon fishing boats in Alaska and the ski slopes of Colorado.
They didn’t reconnect until later in life and were married at 38. By then, they were both eager to start a family.
Georgianna’s sister, Kathleen Patrizi, is pregnant, too. When they found out in the winter that they were expecting together again, they were ecstatic. Almost four years earlier, they had delivered their first children around the same time. Georgianna had Mary Kate and Kathleen had Sammy.
But now, the sisters and best friends face a tough reality.
If Georgianna’s baby dies at birth as expected, then every time Kathleen’s baby would hit a milestone in life, there would be an emptiness knowing that Georgianna’s wasn’t there to follow suit.
She is due Aug. 9, and at 22 weeks into the pregnancy, the Garrys may only have 18 weeks left with their baby.
They want to enjoy every roll or kick inside of Georgianna. So they ask to be told the baby’s sex and they name him.
The day after the news, Georgianna goes for a more detailed ultrasound and agrees to an amnio.The ultrasound reveals that Liam has numerous abnormalities, including holes in his heart, making it very unlikely he will survive the birth.
The specialist tells Georgianna that she has the right to end the pregnancy.
“If this was your baby, what would you do?” Georgianna asks.
The doctor won’t answer. “I don’t want to be judged,” he says.
On the 45-minute drive home to Willoughby from Fairview Hospital, Dan and Georgianna say little to each other.
“Whatever your decision,” Dan offers. “I’m behind you 100 percent.”
That’s all it takes.
Four years earlier when she was pregnant with Mary Kate, Georgianna told Dr. Reinhold, her OB/GYN, “God will give us what we can handle.”
Still, she’s not sure she can handle this: She’ll carry the baby to term.
“What do I hope? What do I pray? Give me 10 minutes, God, 10 minutes, 20 minutes,” she says. “If he does come out stillborn, I’ll still get to hold him. ... But I would just love that little breath.”
That decision puts her in the minority.
“About 75 percent of women will terminate the pregnancy with such a diagnosis,” says Reinhold. “This is only the second time in my practice that I’ve had a woman with this type of diagnosis want to carry to term.”
Two weeks after the second ultrasound, a friend calls Hospice of the Western Reserve’s Pediatric and Palliative Care program on Georgianna’s behalf.
While many people equate hospice care with failing cancer patients, the pediatric program serves children with any life-threatening illness and their families, whether it’s working with a family during pregnancy when a baby is expected to die before or shortly after birth or a child with a genetic disease who may live well into his teens or even adulthood. In some cases, the child makes a full recovery and no longer needs hospice services.
Hospice of the Western Reserve is one of about 60 hospices nationwide to offer services to women who learn that their babies may be stillborn or die shortly after birth. Most of these programs have sprung up in the past decade.
“Because of developments in prenatal testing, more parents are getting devastating news before their babies are born,” says Amy Kuebelbeck, author of “Waiting With Gabriel” and editor of the Web site www.perinatalhospice.org. “This is a new phenomenon inspiring a new kind of care.”
A nurse, a social worker and a pediatric bereavement coordinator, who will help the Garry children deal with Liam’s impending death, are a part of the team working with the family.
On this day, Georgianna wants to review the birth plan that she and Dan have written with the hospice nurse, Deb Fath. They want to make it clear to the Fairview Hospital medical personnel that Liam is not to be whisked away to the neonatal intensive care unit or hooked up to any technology.
They want to hold him immediately, savoring every moment with him until he takes his last breath.
Georgianna has become close to some of the team members over the past eight weeks. Now, about six weeks before her due date, the hospice visits become a roller coaster of emotions, swinging between Georgianna’s naturally happy state and the grim reality facing her.
Today is the first day she is meeting Jen Deuble, the pediatric bereavement coordinator. They’re sitting in the spacious family room in Georgianna’s home. Soon, they’re laughing like old friends about Dan’s fishing trip deep in the Canadian woods. He’s due back later that night.
During any other pregnancy, Georgianna wouldn’t have hesitated to let Dan go. But now, with so many “what ifs” happening in her last two months of pregnancy and the sudden realization that he will even be out of cell phone range — she panicked right before he took off: What if she went into labor early? Dan might not just miss Liam’s birth, but his entire life, too.
Dan and his buddies devised a system where if anything happened, Georgianna could reach him through walkie-talkies coordinated by the front desk of the place they’d be staying.
With that plan in place, she acquiesced.
Then his first day gone, she got a call that Dan was sick — really sick and in bed.
She is in absolute stitches as she relays the irony of the situation to Deb and Jen.
But then her mood shifts again.
“I found out that the baby has to go to the morgue,” Georgianna says. “I freaked out. Who wants their baby in a cold, dark place? When they’re born, and they die, they have to go to the morgue. I cried and cried and cried to my husband.”
Seamus bounces up from the basement where he’s been playing with Mary Kate and Sammy.
Georgianna demonstrates to Deb and Jen how she’s helping the kids realize her pregnancy is different from their Aunt Kathy’s. Mary Kate has already questioned why Sammy gets to keep his baby, but they won’t.
“Do you want to tell them who’s in mommy’s belly?” Georgianna asks Seamus.
“Baby Liam,” he says, smiling proudly.
“Can you tell them about Baby Liam?”
“He’s an angel.”
“But is that a good thing?” Georgianna prods. “That’s a good thing and why? Because we’re one big...”
“Happy family!“ Seamus shouts, his big blue eyes wide and sparkling.
Through the small-town Willoughby grapevine, Georgianna hears that other people have questioned how she can continue to carry a baby she’ll never see grow up.
“People will see me shopping, laughing and giggling, and they’ll go back to my husband and say, ‘She was giggling,’ ” Georgianna says. “Well, what am I supposed to do? I can’t stop life. I have my kids and my husband to take care of, and I have to be strong for them.”
But, with Aug. 9 looming, she admits that when the kids aren’t around, she often lies on the couch and cries.
Another person might be angry with God. Furious, in fact.
“God didn’t do it,” Georgianna says. “I’m angry, but not at Him. He didn’t do it. He’s right by my side, and Mary’s on the other side. When Liam got diagnosed, I said, ‘God, take my one hand. Mary, take the other. Walk me through it.’ If there’s anybody who knows how I feel, it’s them.”
While the experience hasn’t shaken her faith in God, it has unhinged her comfort with her church. After the longtime parish priest retired, she and Dan didn’t feel the support they needed. They decided to leave their childhood church, the place where they were married and the children were baptized.
She and Dan began attending Divine Word in Kirtland, where her other sister, Roseanne Kadas, and family are members. They have set up a meeting to discuss baptism and funeral plans at the same time with the priest, the Rev. Dave Woost.
Though doctors have given her little hope that Liam will be born alive, she still prays every day about the birth.
But as she continues to learn about what Liam faces, she knows that getting those 10 minutes with him alive will be a miracle.
Trisomy 18 — also known as Edwards syndrome — is the second most common trisomy, following Down syndrome, also known at trisomy 21.
According to the Trisomy 18 Foundation, the syndrome occurs in about one in 3,000 births, when a baby has three of the 18th chromosome, instead of the normal two.
Most babies die before birth, with a few living a couple of days. More than 90 percent of trisomy 18 babies will die before their first birthdays.
Ever the optimist, Georgianna pauses. “I feel he will come out alive,” she says. “I don’t know why. I feel it strongly.”
When Georgianna feels Liam kick, she can’t shake the feeling that he is safe and whole inside of her. She wants him to stay that way as long as possible.
But she faces a big decision. Georgianna wants Dr. Reinhold to deliver Liam. She adores Reinhold so much that she traveled to Fairview Hospital to have Mary Kate and Seamus. Now, she wants her to deliver Liam, too.
But Dr. Reinhold has a vacation planned for late July and early August. Georgianna agonizes over the choice of being induced early before Dr. Reinhold leaves or taking the chance that she’ll go into labor while the doctor is away. A few more weeks in the womb could make a difference in Liam’s size and strength.
And she has another concern. She wants a C-section because she has read that it would be an easier birth for the baby and, under less stress, he has a greater chance of being born alive.
But Dr. Reinhold discourages it, telling Georgianna that it will just make everything harder when she returns home — empty-handed and in pain from surgery — to take care of Mary Kate and Seamus.
Her body will recover more quickly from a natural birth, giving her more energy to heal emotionally from losing Liam.
Finally, Georgianna and Dan make the decision to wait until Aug. 6 when Dr. Reinhold returns from vacation. Georgianna will be her first patient on her first day back.
Georgianna continues to pray for 10 minutes to hold Liam while he is still alive.
And, now she begins praying for a C-section, too.
By the end of July, with just two weeks left until the scheduled delivery, Georgianna is exhausted and having trouble sleeping.
One Saturday night, while Dr. Reinhold is on vacation, she wakes at 2 a.m., sits up straight in bed, hyperventilating, her heart pounding.
In her dream, she is in the hospital, ready for her epidural, but she can’t find the phone number for hospice, and her doctor hasn’t arrived. “You can’t do anything! My doctor’s not here,” she yells out. “I’m scared. I don’t even have the birth plan. You can’t do anything! Father Dave isn’t here.”
It takes hours to shake off the nightmare that seemed so real.
Georgianna finishes up her 6:15 a.m. step aerobics class and rushes to drop Mary Kate and Sammy at Divine Word’s Vacation Bible School. She needs to get back to the Y to teach a Women On Weights class by 10:15.
While she’s waiting for camp to get started, she notices the mother of a girl in a wheelchair with a tattoo of a baby’s footprint on her sandaled foot. She can’t help staring at it.
It’s all she thinks about during her next class: This woman is walking in her daughter’s steps every day.
At noon, she returns to the church to pick up the kids and sees the woman. She approaches her, not sure how the woman will respond to questioning.
“Is this your daughter’s footprint?” Georgianna asks. “Not to depress you, but my baby is not expected to live; you’re walking your daughter’s footsteps and I think that’s so cool.”
“Wow, you got that!” the woman says, explaining that her daughter has spina bifida and can’t walk.
Jackie Kustic-Markowski, the social worker from hospice, stops by to bring Georgianna a plaster kit to take Liam’s footprints and handprints. They will make the impressions shortly after Liam’s birth, even if he dies.
After Georgianna agonized over Liam’s body going to the hospital morgue, Dan called a longtime friend who is a funeral director. He promised to personally carry Liam to the morgue, quickly get the papers signed, and then leave with Liam. He assured Georgianna and Dan that Liam will never leave his arms.
Now, with the scheduled induction less than two weeks away, Georgianna is thinking about funeral plans.
She tells Jackie that she doesn’t want a viewing because she doesn’t think she can hold up with her baby lying in an open casket next to her, while she tries to greet people and thank them for coming.
But she wants to read from Scripture at the Mass. She has already asked a friend who also lost a child to do the other reading.
“Maybe it would be a good idea to have a Plan B,” Jackie cautions.
Georgianna nods. She tells Jackie the story of the woman from the morning.
Jackie will bring an ink pad to the hospital, too. With a print of Liam’s foot, Georgianna will be able to have it made into a tattoo.
They go over the list of things to bring to the hospital. Georgianna has outfits picked out for Liam and plans to get a clean disk for her digital camera. She has vials of holy water from two different shrines for a bedside baptism.
Jackie says that she has located a company that does birth/ death announcements that say something like, “Our angel came to us and then went to heaven on (fill in date).”
Hospice also has coordinated a photographer through a national program called “Now I Lay Me Down To Sleep,” which specializes in taking pictures of stillborn babies and children with terminal illnesses. In Cleveland, Linda Ford of Linda’s Lenses will be in the delivery room to capture Liam’s first moments out of the womb.
They talk about who else from the family will be at the birth and about Marguerite’s breast cancer.
“My mother is my hero,” Georgianna says. Later, Marguerite will use the same words to describe Georgianna.
In the days leading up to Liam’s birth, Georgianna leans on Marguerite, crying over the phone to her.
“I’m strong because my mom’s strong,” she says.
The stress of the situation could break some marriages apart, but it seems that being Liam’s parents is bringing Dan and Georgianna closer together.
Shortly after the diagnosis, Dan read Kuebelbeck’s book “Waiting With Gabriel” in one sitting. It is an eloquent memoir, telling how Kuebelbeck and her family found out their baby had a heart defect that couldn’t be fixed, but decided to carry him to term. Gabriel lived two and a half hours. After finishing it, Dan said he understood better what Georgianna was going through.
“It’s a happy, joyful time of your life going to the hospital to have a baby, and now it’s the most horrifying,” Georgianna tells Jackie. “I don’t want to go. But I am excited to finally meet him.”
On Aug. 6,the family gathers at Fairview Hospital at 7 a.m. for Liam’s birth. Dan’s sister Michaela Yabroff will bring Mary Kate and Seamus later.
Father Dave also arrives early.
He has planned to stay at the hospital until the birth and then spend the entire day in the area in case he is needed for Liam’s death.
Georgianna’s sister Roseanne stops to compose herself before entering the room to see Georgianna before she is induced. Roseanne takes a deep breath and puts her head into her hands, as if in prayer.
Deb Fath and Jen Deuble from hospice are there, too, ready to make sure that Liam doesn’t receive unnecessary intervention and to take handprints and footprints for keepsakes.
Everyone leaves so Dr. Reinhold can examine Georgianna. She discovers Liam is breech and tries to turn him, so she can induce labor. When he won’t turn, she tells Georgianna that she’ll have to do a C-section after all.
Georgianna grins. One of her prayers has been answered.
Father Dave gathersthe family around for a prayer before the surgery.
Dan walks into the room, having changed into blue scrubs for the C-section.
“Hey there, Dr. McDreamy,” giggles Georgianna. “What are you doing later?”
Everyone laughs with her.
“Can’t I just be pregnant the rest of my life?” Georgianna says before being wheeled back for the C-section.
While everyone waits anxiously for news in the waiting area, Father Dave announces that Aug. 6 is a special day in the Catholic church: It is the Feast of the Transfiguration, when Jesus appeared as a divine shining light before the apostles Peter, James and John.
Long ago, one miracle happened on Aug. 6. Throughout the C-section, Georgianna continues to pray for another one.
At 10:47 a.m., Liam Anthony Garry enters the world, weighing 4 pounds, 13 ounces and measuring 18 inches long.
Reinhold hands him to Dan before cutting the cord.
He is dusky blue. Deb Fath, the hospice nurse, instructs the Fairview nurses to give Liam oxygen. Oxygen is considered comfort care, not medical intervention.
He has a clubbed right foot, and on both hands, he has long thin “trigger fingers” — a condition where the pointer finger crosses the middle finger, a sign of a chromosomal defect.
“I just took him,” Dan recounts later. “I didn’t know if he was alive or dead.”
He is alive.
“Mommy, you’re a beautiful princess!” says Seamus as he skips into the room with Mary Kate and Aunt Michaela about 20 minutes after Liam’s birth.
“She sure is,” says Dan, looking at Georgianna, who is holding Liam with the family gathered around her bed.
Mary Kate and Seamus get to hold their little brother first.
“He’s not an angel yet,” says Mary Kate.
Someone presses the hand of a stuffed Precious Moments angel and it recites the prayer, “Now I Lay Me Down To Sleep...”
Father Dave steps to the bedside to baptize Liam. Georgianna’s sister Kathleen — who gave birth on the Fourth of July — and her husband, Sam Patrizi, are Liam’s godparents.
“We pray that through this special sacrament that this life certainly has purpose for all of us here,” he says. “And so we now baptize Liam, in the name of the Father, and the Son, and the Holy Spirit.”
Georgianna and Dan believe that Liam has come into the world to teach everyone a lesson of real love. They vow that he will know only love during his time with them.
Three hours later, Liam is still alive. Georgianna tries nursing, but he isn’t able to suck.
Georgianna holds Liam around the clock in the hospital, praying he won’t take his last breath, but wanting him to be in her arms if he does.
The next day doctors do an ultrasound of Liam’s heart. The holes are still there, but some of the other circulatory problems that they expected aren’t as severe as the doctors had predicted.
But the doctor can’t tell them how long he may live.
On Aug. 8, Georgianna brings Liam home from the hospital. Friends and relatives have set up a crib (which Georgianna will rarely use because she prefers holding him) and have run out to buy diapers. No one had thought he’d be coming home.
Since Liam can’t suck, he’ll have to be fed through a tube. Dan quickly becomes adept at threading it back through his nose and into his stomach whenever it falls out.
Within a few days, Georgianna notices that the area around his umbilical cord doesn’t seem to be healing right. The doctor tells her that he has a condition called a bladder exstrophy, where the bladder is outside of the body. It will require extra diapering and a prophylactic antibiotic to prevent infection. The condition can be fixed surgically, but Liam isn’t strong enough to handle anesthetic.
Shortly afterthey bring Liam home, Georgianna and Dan notice a large magnolia tree in the front yard has begun to bloom. Since they live in Dan’s childhood home, Georgianna recalls how the tree had been a favorite of Dan’s parents’ (who have both passed away). His mother had taken numerous First Communion pictures under the tree in the spring.
But no one remembers it ever blooming in August before. The fragrant pink blossoms seem like a welcome gift sent just for Liam.
Jackie, from hospice, helps Georgianna set up a blog on Caringbridge, a free Web site, so people can follow Liam’s progress, while giving the family time alone to cherish what is expected to be his brief life. She posts photos there, too, and friends can leave messages in a guestbook to tell the Garrys that they’re thinking about them.
Pretty soon, Georgianna is writing the blog from Liam’s perspective, giving everyone updates: On Sept. 26, she writes: “Nurse Deb was here yesterday, and guess what !!!??? I hit the 6 lb. mark! Every ounce counts when you’re as little as me!”
True to Georgianna’s sense of humor, many of the entries are funny and poignant at the same time. On Oct. 10: “She put me in another pumpkin outfit! I am so embarrassed!!!! What if I put her into a pumpkin outfit? ... So I guess my mom’s point is, it’s not what you look like, it’s what’s inside. My family might be crazy, but they are full of love and have the biggest hearts. My heart might be sick but it has more love than you could know. I am here to share it with
Soon “Love Forever and A Day, Baby Liam” becomes Liam’s signature on every blog, right along with the moniker “Liam the Lion” for his strength.
Since he is thriving, Georgianna and Dan take him to consultations with a urologist and a cardiologist and start a physical therapy program at the house, to help him grow stronger. But besides prophylactic antibiotics and comfort care, they stand by their decision to not risk surgeries or invasive procedures.
As time passes, people are bold enough to ask Georgianna and Dan if it isn’t harder living with Liam, knowing that eventually he will die.
In other words, wouldn’t it have just been easier if he had died at birth?
“I’m just ecstatic that I have my child in my hands,” Georgianna says. “I’m being a mother to my child — something that they told me I wouldn’t be at all. So this is heaven, heaven. When I’m rocking him or rubbing his feet when I feed him, I think how good his weight feels in my arms, and then how empty my arms are going to feel or how I’ll just miss rubbing those little legs. But at least I get to do it.”
As the weeks and months pass, Georgianna returns to work and teaching aerobics, though on a reduced schedule. Family or hospice volunteers stay with Liam for short amounts of time. Georgianna doesn’t like to be away from him.
By mid-December, Liam has grown to more than 8 pounds. Father Dave asks Georgianna and Dan if Liam could play Jesus in the manger at Divine Word’s family Christmas Eve service.
With more than 600 people in attendance, Georgianna walks up to place Liam in the manger. When she returns to her seat, tears roll down her face.
As the scene ends and she returns to retrieve him from the manger, a little boy leans over to his mom and whispers, “Mommy, is that Baby Jesus?”
“Yes, it is,” she answers. “Yes, it is.”
On Feb. 5, one day before Liam’s 6-month birthday, Georgianna lays him down to get his bath ready. Moments later, when she returns to pick him up for the bath, he has died.
Liam simply fell asleep, without pain, without intervention.
“I only wish I had been holding him,” she writes in her blog.
Georgianna and Dan hold a viewing after all. Liam’s tiny coffin is surrounded by his favorite outfits, toys and miniature shoes. A ceramic sign, “Heaven Sent,” sits next to it. The stuffed Precious Moments angel that played the “Now I Lay Me Down To Sleep” prayer the morning of his birth is there, too.
At the funeral, Father Dave tells a packed church of the inspiration Liam has been to so many people in the six short months of his life. Georgianna doesn’t do a Scripture reading, but after the homily, she, Dan, Mary Kate and Seamus stand before everyone to thank them for their support.
Liam’s tiny white coffin lies near the altar where only weeks earlier, he had played baby Jesus.
In the weeks following Liam’s death, Mary Kate and Seamus go to Build-A-Bear Workshop with Jen Deuble from hospice to make their own Liam Bears, give them special hearts, and dress them in Liam’s outfits, so they can take part of him along with them wherever they go.
Georgianna and Dan each tattoo a print of Liam’s right foot, the clubfoot, to their right feet, with his name in capital letters above it. It is not the tiny footprint that they took on the day of his birth, but a larger one that Jen imprinted the day he died.
Now, Liam will not only always live in their hearts. He will always walk with them, too.