with Mom & Dad
“Everyone was praying
for a miracle - that Melina's heart would heal. The
real miracle here was Melina herself. She was and always
will be our very own little miracle.”
Hello. My name is Maria
Demers and I am married to a wonderful man named Robert.
We live in a small town just outside of Ottawa, Ontario,
Canada called North Gower. On December 1st, 2005 our
lives were blessed with the birth of our first child,
Melina. This is the story of her brief but very exceptional
Rob and I were ecstatic
to find out we were expecting back in April, 2005. Despite
my age (40 years) we opted not to get any testing done
to see if our child had any disorders. Our reasoning
being that no matter what, we would not abort. I am
a teaching assistant who works with specials needs children
and knew that I would be able to take care of a special
needs child should we have one. As a result, I had a
wonderful and stress-free pregnancy - up until a few
weeks before my c-section date when we found out our
baby had a heart defect called Tetrology of Fallot.
Our hearts were in pain but the doctors informed us
that they are able to operate and fix this condition.
On Dec. 1st, Rob and I went in to The Ottawa General
Hospital for a routine ultrasound before I was to have
my c-section on Dec. 5th. The doctors noticed a drop
in baby's heart rate and decided it would be best to
deliver the baby sooner rather than later. We were a
little freaked out (o.k. - I was a lot freaked out)
but we were excited also that we would finally get to
see our baby.
We were informed that
after our baby was born, she would be taken immediately
into a recess room to access her heart condition, and
then would go to Children's Hospital right next door
for immediate surgery. My O.B., after delivering Melina,
came over to me shortly afterwards and informed us that
she had a cleft lip and palate. Although we were saddened
to hear this, we still were excited to be new parents.
They brought Rob and I into a recovery room where we
waited for doctors to come and speak to us.
Then came the bad news.
The doctor there told us that Melina showed all the
signs of having a chromosomal disorder called Trisomy
13(full). She told us that Melina had a bi-lateral cleft
lip and palate, that her left ear had not grown and
there was no ear canal, that she had 6 toes on each
foot, and that they didn't think she had any eyeballs.
This was all terrible to hear, but the worst part was
when the doctor told us that her condition was not compatible
for life. Any parent that has heard these words knows
the feelings of devastation and despair that we felt
at that moment. Melina was expected to live 1 -2 days,
5 - 7 at the most. At this point I still had not laid
eyes on my child yet, and after all the things they
explained were wrong with her, my husband and I were
nervous as to what to expect. The picture we had painted
in our heads was of this poor deformed baby. They finally
brought her to us, all sorts of monitors and wires attached,
and all we could think was - she's beautiful and she's
ours. Rob and I both took turns holding her and crying.
Then a priest came to baptize her.
We were given a private
room with lots of space for visitors. Our families were
notified to get to the hospital because things did not
look good for Melina. Family members arrived and the
all over feeling in the room was of great sadness and
mourning for the beautiful baby that was here but probably
would not be tomorrow. Then tomorrow came and Melina
was still with us, then the next day and guess what?
Yup, still here. Suddenly our feelings of lost hope
and despair turned into happier feelings. After I was
discharged from the hospital, we decided to go with
Melina to CHEO (The Children's Hospital of Eastern Ontario)
where they would give us a private room that we could
stay in and never have to leave Melina. We ended up
staying at CHEO for 5 days. She went from eating out
of a syringe to bottle feeding in a few days and was
up to 2 - 3 ounces every 4 hours. We finally felt comfortable
in caring for our baby and then we decided that it was
time to take her home. And that's what we did. I remember
when we brought her in the house and Rob put her on
the floor in her car seat - I just looked at her and
cried and told her that this was her home.
Weeks, then months went
by and Melina was doing really well. She went from weighing
4 lbs, 12 oz. to 8 pounds, 8 oz. in 2 months. Her feedings
were going well and she was just like any other baby.
We had a great Christmas and New Years with her - got
to visit family and friends. Melina loved to be held
and Rob and I made a point of holding her pretty much
most of the time. She did like to sleep in her swing
also, and was getting used to her crib. However, there
were many a night when I or Rob would sit in the lazyboy
chair, even overnight, and hold Melina in our arms -
her favorite place in the world. Family and friends
didn't mind holding Melina either and there was never
a shortage of volunteers to do this (especially Grandma
& Nanny). Everyone wanted to hold her and everyone
that did agreed that she was special. The funniest thing
is that Melina actually grew 2 teeth out of the part
of her gum that was on the outside of her mouth. First
one came in, then an even bigger one. We were amazed
at this and got a big kick out of it. Rob nicknamed
her "Fang Jr". (Growing up, he was known as
"Fang".) Eventually she knocked out one of
the teeth, and the other became so loose we were able
to twist it off.
Besides one fainting
spell, Melina was thriving. She didn't even turn as
purple/blue when she'd cry anymore and we had thoughts
that perhaps her pulmonary artery had widened. We were
having more difficulty with her feedings however in
that she would be eating fine, then stop and start crying
and we would have to comfort her and then try again
to feed her. We thought it was simply gas pains. Then
on Feb. 7th, things started to go bad. Rob sent me to
bed and said he'd do Melina's next feeding so I could
get some sleep. Then around 2am, I heard Rob shriek
my name. I woke up screaming as I knew that something
very bad was happening. He shouted upstairs for me to
call 911 - that Melina was not breathing. I did so while
Rob started trying to resuscitate her.
Thankfully, he got her
back and she started to cry. They rushed us to CHEO,
but after observing her, her doctor told us it might
be better to take her home since there were many bad
viruses going on that could kill her if she were exposed.
We did take her home and stayed up all night with her
as she slept. The next day, all seemed fine, except
that she wasn't feeding well. Then it happened again.
Rob again tried to get her breathing while I called
911. It took longer this time, but he got her back again.
This time they sent a helicopter to air ambulance her
to CHEO. We drove to CHEO and when we got there, Melina
was in Emerg. with her arms outstretched, face turned
towards an oxygen mask - cooing and making all sorts
of sweet sounds. It was obvious this child needed oxygen
at this point. One doctor noticed that when she fed,
her oxygen saturation went low. Melina was admitted,
and Rob and I decided to go home and get some sleep
and come back the next day. We never had left her before,
but she was doing well with the oxygen.
We came back the next
day and Melina was still doing well. We went for an
echocardiogram and were awaiting news about her heart
and were hoping the news would be positive for a change.
We stayed until midnight and then went back home. The
next morning we got a call that Melina had had another
spell and they had to resuscitate her again. We rushed
into CHEO and met with her cardiologist re: the results
of her ultrasound. Our suspicions about her pulmonary
artery were right - it had widened and was no longer
really the problem. The doctor then proceeded to tell
us that Melina had cardio myopathy. Basically, the walls
of her heart had thickened at an alarming rate from
when she was born. Blood wasn't getting into her heart
like it should be and the condition would only worsen.
Basically, short of a miracle, her condition was terminal.
Rob and I (again) were devastated. It was like this
child just wasn't meant to be with us for too long.
Again we had the terrible task of informing our families
of the bad news.
Melina stopped breathing
2 more times after this, and both times Rob got her
back (with nurses and a doctor at his side.) After that,
however, Rob and I had to make the hard decision to
not resuscitate her any more. It was just too hard on
her and we had to think about what was right for her,
and not what we wanted. Her poor little heart was tired.
We decided that it was time to let Melina go be with
the angels. That day, Melina stopped breathing 3 more
times, with Rob and I holding her, and she came back
to us each time - without any intervention whatsoever.
This was one strong child who was determined to stay
with her Mommy and Daddy a little bit longer. Many visitors
came through our hospital room. We were no longer able
to bottle feed her so we decided to put her on an I.V.
We also agreed to give her small doses of morphine to
help with any pain she may be experiencing and to help
relax her heart and help with her breathing. The next
day, Melina had a wonderful day - no spells. Then, that
night and into the next morning, after all the visitors
had come and gone, Melina started to have her spells
again. Each time we held her and told her it was O.K.
for her to go to sleep - to go be with Grandpa. That
Mommy and Daddy loved her more than anything and that
we knew she was tired. I prayed that she wouldn't be
in pain or be suffering. Just when we thought she was
gone, she would take a big breath and her heart rate
would go back up. We knew what she was doing. She was
preparing us for when she was to take her final breath.
Rob wanted to take Melina
into bed with him, so the nurse set us up and we all
got into bed. Melina rested in my arms for hours until
morning. She had a few more spells, and then Melina
took her last breath. She died peacefully, with both
of us by her side, Sunday, Feb. 12th, 2006 at 9:55am.
Family gathered and were all able to hold and kiss Melina
one last time. After everyone was gone, Rob and I bathed
our little dolly for the last time. We dressed her in
a beautiful knitted yellow outfit, held her more, kissed
her more, and then said goodbye. Over 300 friends and
family gathered at her funeral on Feb. 14th and listened
to stories of how this little baby touched everyone
who was fortunate enough to meet her - hold her.
Rob and I are devastated
by the death of our little Melina. She touched our lives
in a way that we cannot explain. And although our hearts
are broken and we long to hold her again, we take comfort
in knowing that she is up in Heaven with Jesus - looking
down on us with her new eyes. If we could do it all
over again, we would not change a thing. We were only
supposed to have Melina for a few days, but instead
we were blessed with over 2 months. Everyone was praying
for a miracle - that Melina's heart would heal. The
real miracle here was Melina herself. She was and always
will be our very own little miracle.
In closing I would just
like to thank you for reading about our precious baby.
If you are a parent who has a child with Trisomy 13,
don't be saddened by this story or lose hope for your
child. Every Trisomy 13 baby is unique and no one knows
what path they will take - only God. Just love your
child every day that they are with you - with all of
to Trisomy 13
You can read more about
Trisomy 13 and receive incredible on-line support through
the private message board on www.livingwithtrisomy13.org.
-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.