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| Alex Schadenberg |
By Alex Schadenberg
As the executive director of the Euthanasia Prevention Coalition I have had the opportunity to read stories of despair and stories of hope. This story is one of the greatest stories of hope.
This is the story of Lilliana Dennis, a child who is living with Trisomy 18, a rare genetic condition that many doctors have labelled as "incompatible with life."
This is a story of a child who was not supposed to live. A child who has a condition that most doctors would refuse to provide medical treatment for and let to die based on "futile care" theory. A story of a child, who in the Netherlands, may have been euthanized based on the guidelines of the Groningen Protocol because she would be viewed as a "life unworthy of life."
This is a story of a child who is not only living but who is thriving and showing the world that the lives of children with Trisomy 18 are worthy of life, worthy of care and worthy of medical treatment.
On May 23, an article entitled: Hearts full of hope: Surgery extends the life of infant with rare condition was written by Ryan Trares and published in the Daily Journal in Franklin Indiana. This article told the story of Lilliana. Here is the text of the article:
Youtube video from Lilliana's first birthday.
The odds seemed impossible to
comprehend.
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| Lilliana, soon after birth. |
Russell and Rhonda Dennis had just learned their newborn
daughter, Lilliana, suffered from Trisomy 18. The genetic disorder would stymie
her physical and mental development. Fewer than half of babies with the disorder
survive their first week. Only about 8 percent live an entire
year.
All you can do is take her home and love her while you
can, doctors said.
That was about one year ago. The Dennis family never
thought that Lilliana would celebrate her first birthday, but after open-heart
surgery and regular therapy, she is thriving.
Her parents want to hold her up as an example that
though the condition can be traumatic, it’s not an automatic death
sentence.
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| Lilliana's first birthday. |
“She’s proven she can live, she can learn,” said Rhonda
Dennis, her mother. “She still might not live much longer, but we’ve come to
terms with all of the things that the Lord has laid out. He’s in control, and
bad things may come, but that’s part of his plan.”
In their southside Indianapolis home, the Dennis family
have created a system to help protect Lilliana.
A monitor measures the amount of air she is getting in
her lungs, warning the family if she has trouble breathing. Tanks of oxygen are
on standby, as are medications to open her airways, in case the little girl
struggles.
A gastric feeding tube was implanted in her stomach in
April, since she has not developed the ability to eat by mouth. She gets much of
her nutrition pumped into her body during the night, then feeds three times
during the day to ensure she gets the proper nutrition.
The Dennises have four other children, and none of them
have Trisomy 18. Even while Rhonda Dennis was pregnant with Lilliana, she
experienced no complications or warnings that their new child would have so many
problems.
Lilliana was born May 17, 2011, at Community South
Hospital. She was three weeks early and weighed only 4 pounds, 7 ounces. Her
small weight was the first sign that something may be wrong. More concrete
signs, such as her clenched fingers that never seemed to straighten and feet
that curled like rockers, made doctors order a genetic test.
The results showed she had Trisomy 18. The condition,
also called Edward’s syndrome, is similar to other genetic disorders such as
Downs syndrome. When Lilliana was conceived, she had an extra chromosome, which
caused her to develop a heart defect, poorly developed fingers and toes, and
blockages that stunted her breathing.
In Lilliana’s case, the immediate danger was the stress
on her respiratory system. The hole in her heart prevented oxygen-rich blood
from properly circulating through the body. The struggle for oxygen puts undue
stress on the rest of the body, and eventually they die.
Little research has been done on Trisomy 18, due to the
incredibly high death rate. Estimations are that almost 99 percent of babies
with the condition are never even born. For those that are, odds are about 50
percent that they survive their first week.
Such a large percentage of the children born with the
disease die quickly, and doctors have little opportunity to study the physical
effects, said Dr. Sanjay Parikh, Lilliana’s cardiologist at Peyton Manning
Children’s Hospital in Indianapolis.
From the start, the family turned to their faith to
cope.
Russell, president of Heritage Bible College in
Franklin, and Rhonda Dennis turned to a specific Bible verse for guidance —
Romans 15:13. The verse reads, “Now the God of hope fill you with all joy and
peace in believing, that you may abound in hope, through the power of the Holy
Ghost.”
That message became their rallying cry.
“When you’re told these things up front, you just think
it’s God’s plan. I really didn’t think she would live. I thought that she would
live a short time, and we’d just show everyone we still trusted God,” Rhonda
Dennis said.
They also started researching the problem on their own.
Online support groups, as well as national organizations such as the Trisomy 18
Foundation, helped fill in the blanks beyond what their doctors had told
them.
The information was frightening, as it revealed how
deadly the condition can be. But it also offered hope. They read about children
who were attending school and had learned to walk. One woman lived to be 41 and
graduated from college.
“The doctors tell you this condition is incompatible
with life, that it’s fatal, and that all of these things will more than likely
go wrong,” Rhonda Dennis said. “But then you meet these people and see these
kids doing stuff, interacting, walking and talking.”
Initially, Lilliana’s doctors told them it was too late
for surgery and there was nothing they could do. But the Dennises wanted a
second opinion. Working with friends in Ohio, the little girl’s heart scans and
images were hand delivered to a doctor based in Toledo, Ohio, who specialized in
Trisomy 18 cases.
The family also went to see Parikh. He examined her
heart images and immediately said that he could do the surgery.
But he had a catch. Parikh couldn’t guarantee that he
could assemble a surgical team that would agree to do it.
Because the life expectancy of any baby with Trisomy 18
is so short, and surgery doesn’t guarantee a greatly extended life, many health
officials feel that any surgery or procedure is cruel.
“The prejudice is such that, these babies don’t live
long enough, so why put them through the pain and stress of surgery if it isn’t
going to make that great of a difference,” Russell Dennis said.
The Dennises also had to plead their case in front of
the hospital’s ethics board, which must give the approval on risky or
controversial procedures.
The board was split, and unanimous approval was needed
to do the surgery. One of the main opponents of doing it asked the family how
this operation would affect Lilliana’s quality of life.
“My thinking was, if she gets the surgery, she lives. If
she doesn’t, she dies. It was that simple,” Russell Dennis said.
But it was Rhonda Dennis who spoke. She looked at the
physician and simply asked, “What if it was your daughter?” After deliberating
behind closed doors, the committee emerged and gave their approval for the
surgery.
Other parents who had gone through Trisomy 18, as well
as their own research, told the Dennis family they had a six-week window to
repair the hole in her ventricle which would relieve the stress.
Parikh and his team gathered on Oct. 13 to perform the
open-heart surgery, a first for a baby with Trisomy 18. The operation was long,
complicated by Lilliana’s small size and her breathing problems. But by the next
day, she was stable and recovering in the hospital.
After 17 days of recovery, Lilliana came home with her
parents. The change in her health since that time has been
noticeable.
Though they take precautions with an oxygen monitor and
medications, Lilliana’s breathing has become stronger and more regular. The next
challenge is teaching Lilliana’s body to work the way a small child’s
should.
Rhonda Dennis is working with her to learn to feed by
mouth. She has an oral stimulator that allows her to coat Lilliana’s gums and
inner cheeks with baby food, most of which the girl spits up.
Lilliana also sees a physical therapist six times each
month. The sessions are designed to help with basic muscle tone, such as lifting
her arms and legs, and moving her head. She still can’t lift her head up much
when laying on her stomach, but has started actively moving her lower body
around.
“She has great hip action. She can scoot all over the
floor,” Rhonda Dennis said.
To celebrate Lilliana’s first birthday, the Dennises had
a celebration open house. She received her own birthday cake, and gifts from
family and friends. After 12 months of fear and concern for their daughter,
Russell and Rhonda Dennis are grateful to focus on the positive.
They understand that Lilliana will likely struggle for
the rest of her life, and they’ve accepted that. Their goal now is to give their
daughter the best life she can have while she’s alive, and to reach out to other
parents to help them with the myriad decisions that come with Trisomy
18.
“If the parents don’t know what to push for and what to
demand, a lot of times they won’t get it,” Rhonda Dennis said. “There are
statistics that show that many of these children don’t live long. But you don’t
know that for sure.”
