|Samuel and Mom
My journey with amazing
little Samuel began on March 13 2006. I was called to
come into the office to discuss the results of my A.F.P.
that I had at 16 weeks two weeks prior on March 1st.
They explained to me that I had tested positive for
trisomy 18. They tested it twice, recalculating my due
date for they thought that maybe I had been tested too
early. Both results were positive, so I found myself
two days later at the perinatologist office waiting
to receive a level two ultrasound and amnio. they performed
the ultrasound first. The doctor , after looking at
the baby for 45 minutes, said that the baby looked just
fine and assured me that they usually always find markers
on ultrasound with those babies.
He then performed the
amnio anyway and told me to go home and relax. I had
two weeks of elation. Then two weeks later, on March
29th, my world as I had known it would change forever.
I received a phone call from my doctors office to come
in right away because they had my test results. When
I got in there, my doctor told me the amnio was also
abnormal, not for trisomy 18, but for trisomy 13. I
was in pure shock! I told the doctor that the ultrasound
was normal and he said that there are just some things
that you just cannot see. He gave me three choices,
adoption, abortion, or to keep the baby in which our
lives would change forever. We were given two days to
make the decision.
Two days later, on March
31st, My husband and I found ourselves in the doctors
office hearing the worst things I could possibly ever
hear in all my life. Unlike most of the trisomy families,
we did not hear the typical "incompatible with
life" or "no hope". Those things would
have been hard enough to hear. What we heard, was that
we already had three children and with an abortion,
we could move on and forget and one day have more children.
He also said that if our son was in a car accident and
all of his bones were broken, what choice do you think
you would make? Do you really want to change diapers
for the rest of your life? This is not a baby, this
is a fetus. Why would you put your other children through
this? Multiple abnormalities and a one in a million
shot of a mild case. There was much more, but you get
the idea. He then put us on the phone with an abortion
clinic right then and there. I can just remember being
in a fog and feeling very paralyzed.
Well, we chose to continue
the pregnancy in spite of everything. I changed doctors
immediately and through a lot of tears and soul searching,
and finding support from the trisomy group, (Therese
Ann, Bess, and Liz) and through the strength of the
Lord, continued on this difficult journey. By the way,
my doctor never told us that it was Mosaic trisomy 13.
we looked at our genetic papers and did our own research.
During the pregnancy,
No abnormalities were ever found, not on ultrasound
nor by the cardiologist. It was a bittersweet pregnancy
that at times I could really enjoy and some days I wished
I was not pregnant at all! It was such an emotional
roller coaster ride to say the least.
On July 17th, at 34 weeks,
due to a high amniotic fluid level, Samuel Charles Mabeus
entered the world at 12:58 p.m. weighing in at 4 lbs.
15 oz. and 17 inches long. He was immediately taken
to the N.I.C.U. due to his breathing. He spent the next
few days on a ventilator, feeding tubes and bili light.
A few days later, he still had a few scares of heart
rate dropping along with apnea.
Then, on Wednesday July
26, we got some unexpected news. Samuel’s karotype
came back normal! He had no detectable traces of Trisomy
13 in his blood! On Tuesday, Oct 2, this was confirmed
by skin test. Again, no trace of trisomy 13 had been
found in his body. The doctors discussed the possibility
of a cellular rescue and Mr. Samuel was discharged from
At about 6 months old,
it became obvious that Samuel wasn’t developing
as the typical child. He continued to radiate God’s
love and joy and was nothing short of a blessing. For
whatever reason, little SamChops’s health went
down hill and he developed feeding and breathing issues.
Some doctors believed triomsy 13 must be in his little
body somewhere. Samuel continued to love and fight for
his little life. He proved himself more than a disorder
or diagnosis. Samuel was Samuel and that was how God
intended him to be.
Little Sammy needed a
feeding tube and eventually and treach. He continued
to hold on until Feburary 29 2008, when his mission
of earth was completed and he was called to his heavenly
home to be with Jesus, Mary, and all the angels and
Saints. Samuel was a joy and a blessing to all who knew
Sadly, Samuel died while
moving out of state. He was in the van with his Mommy,
brothers and nurse and he got a really high fever (106F).
Everyone did everything they could to save him. His
nurse began CPR and EMT’s worked on him as well.
He arrived at a hospital in Georgia where he continued
to bless everyone he met, even in his death. Little
Sam Chops touched the hearts of the nurses and doctors
and many people in that rural town in Georgia. His life
was nothing short of a gift and a blessing to all those
who knew him and countless others. Thank you to everyone
who loved and supported Samuel and his family during
his life. Your thoughts, prayers, and support carried
us through this journey. Please continue to lift us
up in prayer in the weeks and months to follow. We love
The Mabeus Family Jim,
Mary, Hannah, Caroline, James, Adam, and Samuel in heaven
to Misdiagnosed 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.