SHORTLY before their baby, Eli, was born, Brandi McGlathery
and Troy Thompson talked about the physical qualities they hoped he would
possess.
“I said I wanted
him to have blond hair,” Brandi said. “And Troy said, ‘I hope he doesn’t get my
nose.’”
At the time, it
was just a joke between two parents anxiously awaiting their baby’s arrival.
After Eli was born, though, it became the kind of memory that now makes them
wince at its irony.
When Eli was
born at South Baldwin Hospital in Alabama on March 4, weighing 2.9kg, Dr. Craig
Brown immediately placed him on Brandi’s chest. As the doctor helped Troy cut
the cord, Brandi looked at Eli for the first time.
“I pulled
back and said, ‘Something’s wrong!’ And the doctor said, ‘No, he’s perfectly
fine.’ Then I shouted, ‘He doesn’t have a nose!’”
The doctor
whisked Eli away, and for about 10 minutes Brandi was left alone in the
delivery room thinking surely she hadn’t seen what she thought she saw — or
didn’t see.
When Dr. Brown
returned, he put his arm on her bed and took a deep breath. “He had the most
apologetic look,” she said. She knew something was wrong with her baby. She
started to cry before he said a word.
She looked to
Troy, who, she said, never cries. He had tears in his eyes. She’d been right.
Eli didn’t have a nose.
Meanwhile, he
had started breathing through his mouth right away. She remembers that he was
wearing a tiny oxygen mask. Not having a nose “didn’t faze him at all,” she
said.
“I was
the first person to see it,” she said. “Even when they took him away, my family
still didn’t know something was wrong, due to being caught up in the excitement
of his arrival. It wasn’t until they opened the blinds of the nursery that
everyone else saw.”
Before she knew
it, Eli was taken to USA Children’s and Women’s Hospital in Mobile, Alabama.
Throughout the night, Brandi called the number they’d given her every 45
minutes or so to check on her baby. She wasn’t sure he would make it through
the night — but he did.
And her “sweet
pea,” her “miracle baby,” has been surprising his parents and others who love
him, as well as the medical staff who have cared for him, ever since.
Nothing
unusual
The next day,
her doctor checked her out of the hospital in Foley so she could be with her
baby in Mobile. The doctor had also had a sleepless night, she said. “He said
he’d gone back over every test and every ultrasound,” but he couldn’t find
anything unusual in her records.
There were a few
aspects of her pregnancy that were different from her first pregnancy with her
4-year-old son, Brysen.
Right after she
found out he was a boy, at around 17 weeks, she said, she lost 10 pounds in
eight days because she was so severely nauseated. Her doctor prescribed a
medication that helped her gain the weight back and keep her food down. She
continued to take the medication throughout her pregnancy, she said.
On a 3D
ultrasound, she and Troy even commented on Eli’s cute nose. The imaging shows
bone, not tissue, she said — and he has a raised bit of bone beneath the skin
where his nose should be.
After going into
early labour three times, Brandi delivered Eli at 37 weeks. At 35 weeks, her
doctor told her that the next two weeks would be critical to the development of
the baby’s lungs and respiratory system. “He said, ‘Let’s try to keep him in as
long as we can,’” she remembered.
Happy, healthy baby
For the first
few days of his life, Eli was in one of the “pods” in USA Children’s and
Women’s Hospital’s neonatal intensive care unit. At five days old, he had a
tracheotomy. “He has done wonderfully since then,” Brandi said. “He’s been a
much happier baby.”
Because of the
trach, he doesn’t make noise when he cries anymore, so Brandi has to watch him
all the time. She has been going back and forth between the Ronald McDonald
House and Eli’s room during his stay.
“Between the
nurses here and Ronald McDonald House, everyone has gone above and beyond,” she
said. “The nurse from the pod comes to check on her ‘boyfriend.’ She got
attached to him.”
Besides not
having an external nose, he doesn’t have a nasal cavity or olfactory system.
(Despite that fact, she said, he sneezes. “The first time he did it, we looked
at each other and said, ‘You heard that, right?’”)
Eli has
an extremely rare condition known as complete congenital arhinia, said Brandi,
adding that there are only about 37 cases worldwide like his. The chance of
being born with congenital arhinia is one in 197 million, she said.
Even at USA
Children’s and Women’s Hospital, Eli’s case has baffled the NICU. “Everyone has
used the same words,” Brandi said. As soon as they found out he was on his way,
she said, the staff started doing research. They only found three very brief
articles on the condition. Now, his doctors are writing a case study on him in
case they ever encounter another baby like Eli.
After he got the
trach, Brandi wanted to start breastfeeding. The lactation consultant
encouraged her, and together they searched the internet for more information.
Brandi became the first mother ever to breastfeed a baby with a trach at the
hospital, she said — and now the lactation consultant “is actually using him to
put an article together about breastfeeding with a trach to encourage mothers
of other trach babies to attempt it.”
Thanks to
her internet research, Brandi found a mother in Ireland, Gráinne Evans, who writes
a blog about her daughter, Tessa, who has the same condition as Eli. She also
found a 23-year-old Louisiana native who lives in Auburn, Alabama, and a
16-year-old in North Carolina, she said. With every case she found, Brandi
started to feel better and more convinced that Eli could not only survive his
babyhood, but that he’ll grow to adulthood.
Communicating
with Tessa’s mother in Ireland has been especially gratifying for Brandi. She
knows she and Eli are not in this alone.
‘He’s perfect’
While it would
seem easy enough for a plastic surgeon to build a nose for Eli, it’s not that
simple, Brandi said. “His palate didn’t form all the way, so his brain is
lower,” she said. “It’s a wait-and-see game.”
His condition
affects his pituitary gland, she said. He’ll have to be past puberty before his
nasal passageways can be built. Until then, she’d like to spare him any
unnecessary facial surgeries.
“We think he’s
perfect the way he is,” she says, nodding toward the sweet, sleeping baby in
his crib. “Until the day he wants to have a nose, we don’t want to touch him.
We have to take it day by day.”
Within a
month after Eli goes back home to Summerdale, he will have to travel to the
Shriners Hospital for Children in Houston and Galveston, Texas, to meet with
craniofacial specialists. “They will work with him for the rest of his life,”
she said. “Every three to six months, we’ll be going back for scans and
check-ups for at least the next ten years.”
Brandi said
that, of the people she’s found online, some are opting to have noses and nasal
passageways built (including Tessa), while others haven’t.
“We’re going to
do our best to make sure he’s happy,” she said. “The rest of him is so cute,
sometimes you don’t realise he doesn’t have a nose.”
Brandi’s older son,
Brysen, and Troy’s four-year-old daughter, Ava, are too young to interact with
Eli in the hospital. Brandi was grateful to one of the nurses who unhooked him
and let the kids see him. “Ava asked me, ‘When you were little, did you have a
nose?’” Brandi said. “She said, ‘I think he’s cute.’”
Brysen pressed
his hands against the window separating him from his baby half-brother and
said, “He’s perfect!”
‘Facebook
famous’
Brandi, who got
pregnant with Brysen when she was a senior in high school, had planned to start
going to school to become an LPN (licenced practical nurse) like Troy’s sister
and his mother. “That’s all on the back burner now,” she said. Because of her
experience at USA Children’s and Women’s, she said she now wants to be a NICU
nurse.
Her best friend,
Crystal Weaver, logged onto Brandi’s Facebook account and created the Eli’s Story page to let friends and family members
know what was going on. “It’s easier that way to update everyone at once rather
than to call everyone individually,” Brandi said. “It’s overwhelming. It’s all
on my shoulders.” Within a day, she said, Eli’s Story had 2,000 likes (it now
has around 5,500). “People I didn’t know were sending messages,” she said.
Crystal also
started a Go Fund Me account,
which has raised about $4,300. “We’ve got years and years of surgeries and
doctor’s appointments nowhere close to us,” said Brandi, who returned to her
job as a bartender this past weekend. She plans to keep working two nights a
week for a while. Being around her work family, she said, helps her maintain a
sense of normalcy.
A fish
fry is planned as a fundraiser for Eli’s medical fund on April 11 at Elberta
Park in Elberta, with raffles for prizes including a weekend stay at a condo in
Gulf Shores and a charter fishing trip.
“It makes me
feel really good that I have a support system,” Brandi said. “Everybody’s been
awesome.”
Updating Eli’s
page, adding photos and reading the positive, encouraging comments from
hundreds of people, as well as reaching out to others who have been through
what she’s going through “keeps me sane,” Brandi said.
Recently, Brandi
posted a video of Eli waking up from a nap. From Ireland, Gráinne Evans
commented: “I’ve actually watched this more times than I could admit!”
Eli is “100 per
cent healthy,” she said. “He just doesn’t have a nose. He has a few hormone
deficiencies, but other than that he’s healthy.”
Brandi seems
wise beyond her years. She is already worried about “the day he comes home and
someone has made fun of his nose,” she said. “We don’t want anyone to pity him.
We never want anyone to say they feel sorry for him. If other people express
that, he’ll feel that way about himself.”
She jokes
that Eli is “Facebook famous” now. “I can’t hide him,” said Brandi, who is a
singer. “Eli’s gotten more publicity in the past two weeks than I have in my
whole life!”
She’s been
putting together a “journey book” full of medical records and mementos to give
Eli one day. “I’m excited to show him one day, ‘Look, from the moment you were
born people were infatuated with you.’”
‘I’m doing
something right’
In his short
time on earth so far, Eli has brought his family together, Brandi said. She and
Troy had been engaged, then called off the wedding and were “iffy,” and then
they broke up. A week later, she found out she was pregnant.
“Eli has made
Troy my best friend,” she said. “He has brought us closer than when we were
engaged. To see Troy with him is really awesome.”
Troy has been
her rock, reassuring her since Eli was born, she said. “He tells me, ‘Brandi,
it’s OK. It will end up happening the way it’s supposed to be.”
Last Thursday,
Brandi posted on the Eli’s Story page that Eli had passed his car seat trial
and newborn hearing screening. “He now weighs 7 pounds (3.1kg), and we’ll be
meeting with home health to learn how to use all of his equipment so we can go
home Monday.”
Everyone in
their family has taken CPR classes, and Brandi and Troy have learned how to
care for Eli’s trach. The couple has extended family nearby, and Troy’s father
and stepmother plan to move to Baldwin County from Mobile to be closer to Eli.
As she prepared
to take her baby home from the hospital on Monday morning, almost four weeks
since he came into the world, Brandi was excited to take care of him for the
first time in the comfort of her own home, and to finally introduce him to his
big brother and sister.
Though Brandi
said her heart melts when Eli’s little hand wraps around her finger, he’s the
one who already has her wrapped completely around his. He recognises his
parents’ voices, and seems comforted by them. “As soon as he hears us, he looks
around for us, finds us, then stares at us smiling,” she said. “It makes me
feel like I’m doing something right, that through the ten to twelve other
women, the nurses who have been caring for him for the past month, he still
knows who Mommy is!”
