Dear Mr. Sparks,
My name is Clare. I am writing on behalf of my husband Dave and our
precious Cherub, Sammy. I have been meaning to tell his story for over a
year but haven't found the time until today.
Dave and I were married for two and a half years when we decided we
needed a baby to share all our love with. Our first attempt to get
pregnant was successful. I guess standing on your head really does work.
My pregnancy went along perfectly. I had an ultrasound at three months.
We were told things looked normal. I was supposed to have another
ultrasound at five months but since the first one was normal and we
wanted the sex of our baby to be a surprise, it didn't happen.
I went into labor 10 days before my due date. The labor and the delivery
went smoothly and without a single problem. At 2:50 p.m. on October 9,
1999, Samuel Lee Retterer was born. We fell in love with him the instant
we saw him. I wanted desperately to hold him but his color was very
poor and the nurse said he wasn't breathing. She told us that he
probably just had some fluid in his airway but my gut told me it was
something more serious. The longer the doctors worked on him the more
worried we became. One minute after he was born his APGAR score was 1.
Finally, about 10 minutes later, after they intubated him, I was able to
hold my sweet Sammy as a nurse pushed air into his lungs. It lasted
less than a minute before he was taken away from me to go to the NICU. I
told Dave to stay with Sammy.
Half an hour later, two doctors came to my room to tell us the
devastating news. Our son had a severe, right-sided, Congenital
Diaphragmatic Hernia. He had a 50/50 chance of survival. I was numb with
shock. The first thing we thought to do was pray. We prayed only for
the Lord's will for Sammy, no matter what his will was. We felt so
helpless. We realized we were dealing with something that was completely
out of our hands and we had to rely on doctors, nurses, drugs,
technology and most of all, God.
About four hours after the delivery, I was finally able to get out of
bed. I was wheeled into the NICU to see my son. I thought he would be
hooked up to a couple of tubes but what I saw was totally unexpected.
Dozens of monitors, tubes, wires, machines and nurses were helping my
baby. I broke down in tears as I saw all the things it was taking to
keep my Sammy alive. I had to maneuver through everything just to touch
his little hand.
Sammy's doctors decided it was critical that he be moved to a hospital
that had an ECMO machine in case he needed it. Children's .Hospital of
Denver was just across the street from where Sammy was born. At 14 hours
old, they transported him. Fortunately, Sammy never needed ECMO.
By the time Sammy was four days old, he was stable enough to have
surgery to repair the hernia. The surgery was successful but Gore-Tex
was needed to patch his diaphragm. Sammy now was on the road to recovery
and each day got a little better for him. He was on a high frequency
ventilator for about two weeks, then the conventional ventilator for
another week and then finally after Sammy extibated himself twice, they
put him on oxygen through a nasal canula. He was also on nitric oxide
for two weeks along with an assortment of other drugs including several
high blood pressure medications. After Sammy proved he could nurse and
gain weight we were told he could go home.
Finally, after 34 days in the hospital, we were able to bring Sammy
home. We were thrilled! No more crying every time I had to say goodnight
to my baby and leave him to the care of others. That was the worst. He
left on oxygen. When Sammy was two months old, his lung unexplainably
collapsed. His doctors tried several ways to get it open but we have
never been successful. We would like to know if any other child with CDH
has had a collapsed lung. If so we would like to hear what therapy your
child had for it.
Sammy is now 15 months old. He is a very happy and energetic boy. He is a
little small for his age but has a big personality. He is walking and
has caught up as far as his development goes. He is off all his reflux
meds and inhalers but still gets one nebulizor daily for his collapsed
lung. Sammy is still on oxygen for about 20 hours a day. We are hoping
we will be able to take him off it completely by the spring of 2001. He
just battled pneumonia and had to be hospitalized over Christmas. He
came through it bravely and quickly. Amazingly, that was the first time
Sammy had ever been sick. I am a total germ- a-phobic mother and I guess
it paid off.
We want to take this opportunity to thank a few people. Dr. John
Kinsella and his team, especially Nancy Wass. Dr. Kinsella is one of the
pioneers of Nitric Oxide and was very kind and helpful to us. Dr. Joe
Janic who performed Sammy's operation. Dr. Adam Rosenberg and everyone
else at the Special Care Clinic who has taken wonderful care of Sammy.
The nurses who took care of Sammy when he was born, especially Christy,
Brenda, and Amy. Nurses simply do not get all the credit they deserve.
We want to thank Dr. Jan Paisley who has been Sammy's primary doctor.
Jan has gone out of her way for us and not only been an outstanding
physician but a wonderful and loving friend. Finally, we want to thank
all of the thousands, literally, of family and friends for their
prayers, support and love. There is nothing I can say or write about
Sammy to express what a remarkable boy he is. He lights up our days and
our lives with his smile. His laugh is music to our ears. His very wet
kisses are the reason we get out of bed. We thank the Lord every day for
our precious Sammy. I know that He is the reason Sammy is with us. We
thank Sammy for coming into our lives. He has brought us so much
happiness. He has also brought us closer to God and has made us realize
what is really important in this life. We love you Sammy! Thank you for
letting us share our story with you and may God bless you and your
Written by Samuel’s mom, Clare Retterer (1999, Colorado)