April 1, 2003 - October 26, 2003
How can a life that was lived
in 6 months and 25 days take so many words to describe?
Although Michelle’s life was never easy, it was
filled with love and faith. I was 41 years old when
we discovered I was pregnant with our fifth child. After
the initial shock and with the steadfast support of
my husband, I grew in excitement at the prospect of
adding another child to our noisy and fun family. During
a routine sonogram in my seventh month, my family doctor
discovered excess amniotic fluid and some unusual things
so I was sent to a specialist for a level II sonogram.
There I was first told that there was a good chance
that my baby would not be born alive. My heart almost
stopped beating and I could barely hear anything he
said after that as my mind shouted “No!”
The doctor did mention Trisomy 18 but all I caught was
Trisomy and it was never brought up again. When I did
look up Trisomy a month later, I found T21 Down’s
Syndrome so I thought I knew what to expect. They encouraged
an amniocentesis but I refused.
With many friends and family
members praying for us, I woke up the next day with
a sense of calm and strength. I knew that God would
guide us through whatever lay ahead. The rest of the
pregnancy was fairly normal, except that I was very
uncomfortable because my belly was huge with all that
excess amniotic fluid. We visited the perinatologist
a few more times for more ultrasounds but no one ever
mentioned T18 again. The baby was small so my very optimistic
family doctor agreed with me that we wouldn’t
deliver her early and give the baby some extra time
to develop so we scheduled to be induced at almost 42
During the contractions, the
baby started showing signs of distress, so an emergency
C-Section was ordered. This wasn’t unexpected
but traumatic never the less. At 2 p.m. on April 1,
2003, Michelle Rose Ekis was born. She was 5 lbs. 9
oz. and 18 " inches long. She needed a little assistance
to get started breathing but she was alert within a
few minutes. She was put in the NICU with some oxygen
to get her levels up but by the next day, Michelle was
only on forced air. Then the next day, she was breathing
We received the devastating
news that Michelle had T18, the next day while in the
hospital. I was an emotional wreck at first and I could
not hold or look at Michelle without bursting into tears.
But slowly I realized that God had given me a beautiful
child to love and take care of. Only He knew the length
of her life and only He knew what Michelle could do.
And I realized that this was true of all my children.
It just took a child as special as Michelle to remind
us that tomorrow is never guaranteed with anyone.
So after a three week stay
in the NICU, we took Michelle home with us. We had learned
to feed her with an NG tube since she couldn’t
learn to nurse and she tired easily while drinking a
bottle. We were set up with home healthcare nurse, counselor,
and volunteers from a pediatric hospice and occupational
therapy from the local children’s services. These
women were my angels. Janet, the nurse, accompanied
us to all of Michelle’s doctor appointments. The
volunteers gave me some needed breaks and loved all
my children when they needed the extra love. They all
comforted me when we found out that Michelle did have
an 8 mm VSD in her heart and they gave us information
as my husband and I made many decisions on Michelle’s
Michelle grew and life became
“normal”. We were a family. We took Michelle
to church, the kid’s soccer games, trips to the
park and events at school. We explained to our children
that Michelle had T18 and that was just the way she
was born. We told them that although babies with T18
usually don’t live long, we don’t know what
God has planned for Michelle. So we will just love her
and enjoy her for however long she is with us.
We celebrated whenever we could
and everyone loved to hold Michelle. Michelle would
smile and giggle at the antics of her sisters and brothers.
She loved to be talked to and was almost ready to roll
over. Evenings were hard because she never wanted to
fall asleep and during the day, she spent a lot of time
being fed through her NG tube so she would not throw
up. But at 6 months, we were beginning to think Michelle
might be one of the children to make it past one year.
We threw a huge party for Michelle’s
6 month birthday to celebrate our little daughter and
to thank everyone who had helped us through so many
prayers, dinners, transportation of children to events,
childcare and all the other ways our friends, neighbors
and church members helped us out. I am still touched
by how many people were involved in Michelle’s
life and touched by our miracle. One week later, after
a brief hospital stay for an infection, Michelle’s
heart and lungs gave out. She died quietly and peacefully
in her sleep while I slept in the bed next to her. I
woke up at 1:30a.m. and realized Michelle had gone to
our eternal home and our Father's loving arms.
We miss her very much. We have
faith that we will be reunited again in heaven. God
gave us such a wonderful gift of 6 months and 25 days
with Michelle. She has touched so many lives and changed
our family in ways that we are still discovering. She
was so beautiful. Her smile would light up her whole
face and we were stopped whereever we went. She made
so many people think about the gift of their children.
She didn't "do" anything. She just loved and
"I know God will not give
me anything I can't handle. I just wish that He didn't
trust me so much."
to Trisomy 18 Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.