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Lincoln's Story
Our
story began on June 19, 2006 with the birth of our precious
baby boy Lincoln Tanner Roberts. I gave natural birth
at 10:26 in the morning at 38 weeks; he weighed 6 lbs
5 oz and was 18 inches long. The nurse handed me our
baby and after finding out that we had a boy, noticed
that he had an extra digit on each hand. We were assured
this was common and that it could easily be taken care
of. We had a few hours with Lincoln before the nurse
change and the taking of Lincoln to the nursery. We
had no idea that anything was wrong until the neonatologist
came in to speak to us and let us know that they had
to put in an IV and give him oxygen. She explained to
us that she believed that Lincoln had Trisomy 13 but
couldn’t give us a definite positive answer until
the blood work came back. She told us that the condition
is fatal and that we would probably have a few days
with him. We at once went to the NICU to spend time
with him as we did not know how long we would have.
It seems a blur looking back on that time. A rush of
pure joy of just having a child and a rush of devastation
of finding out that your child is going to pass away.
We spent a full week at Phoenix
Baptist Hospital. The nurses and doctors were so amazing;
they taught us how to care for Lincoln as he was on
oxygen and a feeding tube. He was able to suck but just
not enough for a full feeding. We decided to bring Lincoln
home on Monday morning June 26th; it was one of the
scariest days of my life. We had a rush of emotions
of not feeling prepared to care for our sick baby and
not knowing how long he would be with us. We did have
the wonderful support of Hospice of the Valley. Having
Lincoln at home was so great, he transitioned well and
it was so great to be together as a family with our
1-year old son.
Lincoln continued to do well,
eating more and needing less oxygen. He wasn’t
as sensitive to light and noise and could even tolerate
his brother messing with him a little. We had so much
hope that he would be with us for a long time. On Wednesday
July 5th he had his first apnea episode, he couldn’t
get settled down and held his breath while he was crying
and passed out from lack of oxygen. We were so shaken.
The following day he continued to have more episodes
and we knew that he wasn’t doing well. We had
a family friend come over to take pictures on Thursday
afternoon and about one hour after she left Lincoln
really started to go downhill. He stopped breathing
for almost 4 minutes and we thought he had passed and
then all of a sudden he took a huge gasp of air and
regained breathing. It felt as though our heart was
being ripped out every time this happened. This continued
through the night many times over, he just kept holding
on. We said goodbyes so many times, it was torture.
I couldn’t let go of him, I wanted every second
I could holding my incredible son. He took his last
actual breath in the arms of his daddy and passed away
in his mommy’s arms. I held him for a long time,
rocking him and weeping. Lincoln went to be with Jesus
on July 7th at 1:40 in the afternoon. We were able to
have 18 days together.
During our journey with Lincoln
there is a scripture that fully explains our feelings
in all that we went through in this struggle. It is
Lamentations 3:1-32, it speaks of desperation and feeling
of abandonment and in the middle it starts to speak
of hope and God’s mercies and that we won’t
be consumed. This scripture was a huge encouragement
to know that God’s mercies don’t fail. I
still don’t understand why this happened, I’m
sure I never will. But I do know that God is gracious
and He is still faithful.
If there is anyone that reads
this and is in the Phoenix area and wants to talk to
someone who has gone through the experience of having
a Trisomy 13 baby I would love to talk, listen and cry
with you.
Mark & Jill Roberts
623-521-0212
Back
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.
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