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My name is Kathy Stolper, my husband,
Bob, and I are the proud parents of five beautiful children.
Carson (9), Patrick (3), and our 22 month old triplets, Gina,
Lena, and Tina. This story is about Gina, Lena, and Tina overcoming
the odds with a diagnosis of TTTS and the associated complications
of being born extremely premature.
We had a spontaneous, monozygotic, monochorionic
triplet pregnancy. From week 8 of our pregnancy, we had an
ultrasound every other week to monitor the progress of the
triplets. At 18 weeks, we were told that there was a rare
disease of the placenta called TTTS and our girls had it!
In our case, baby ‘C’ was the donor, baby ‘B’
was the major recipient, and baby ‘A’ was a minor
recipient. The doctor drained 2 liters of excess fluid from
the amnio sac in an attempt to relieve some of the pressure
on the girls. We were told that when TTTS is diagnosed this
early, the pregnancy would naturally abort, and that this
would most likely happen in the next couple of weeks. I was
advised to go on bed rest and, if the babies were still there
in two weeks, to think about reducing the number of babies
to give the stronger ones a better chance of survival. It
was suggested that since baby ‘B’ was having the
most difficulty, that she should be our choice for the reduction.
Reduction was never an option in our minds.
We believed that God, and only God, had that choice. Not willing
to just sit and wait it out for two weeks, Bob got on the
internet and found the website for the TTTS Foundation. He
immediately contacted Mary Slaman-Forsythe and she was an
earthly angel. Not only did Mary lend a shoulder to cry on
and compassionately listened to our fears, but she also provided
hope in the form of experience and information. She told us
about Dr. Julian E. De Lia, M.D. of the International Institute
for the Treatment of Twin-to-Twin Transfusion Syndrome, St.
Joseph's Hospital Milwaukee, Wisconsin who was performing
laser surgery on others with TTTS. We immediately sent an
e-mail to Dr. De Lia telling him of our situation and asking
if he would be willing to help us. We were amazed to hear
from him the next day. He told us that he had never performed
his surgery on triplets before, but that he would be willing
to examine me for the possibility. We let Mary know and since
time is critical in these situation, she arranged for the
Foundation to fly us to Dr. De Lia within 48 hours, she told
us to contact our insurance company and advised us on exactly
what to tell them to have the best chance of getting their
approval, and she even offered to talk to them herself. In
the meantime, we were frantically trying to arrange care for
our boys. They were six and one at the time and all of our
family lived in other states! Dr. Richard Porreco, our Denver
specialist in at-risk multiple births, warned Dr. De Lia that
we had ‘floating membranes’ as a result of the
fluid reduction and before we were able to finalize any plans,
Dr. De Lia called to say that he could not perform his laser
surgery when floating membranes are present. He advised me
to stay on fulltime bed rest, to drink Ensure, and to pray
that the pregnancy continues to at least week 28! (We felt
sorry for him as he was sincerely interested in helping our
babies and has continued to contact us with encouraging words.)
We began having ultrasounds once a week
and each week we were told that baby ‘B’ would
not make it to the next week. We were also told that if one
of the babies died, the other two would die soon after. I
did a lot of praying, a lot of crying, and gave the babies
a lot of pep talks. While all of this was going on, we had
to maintain some sort of normalcy for the boys’ sake.
Well, we did not make it to 28 weeks gestation. At 25 weeks
gestation, my water broke and all attempts to stop contractions
failed. We were advised to name the babies because their chances
of survival were zero to five percent and that it would be
easier to name them now than after they were gone. The girls
were taken by emergency c-section, all three were resuscitated
and put on ventilators. They spent the next 134 days in the
NICU with one foot on earth and one foot at heaven’s
gate. It seems like everyday we were told that one, two, or
all three would not make it through the night. Mary continued
to contact us and give us as much encouragement as she could.
With her help, I was able to remember that God is the one
in control. Even though we gave thanks for the wonderful doctors,
prayed that they be given the knowledge and inspiration to
continue helping our babies, we knew that whether we liked
it at that moment or not, God’s plan for the girls would
be the best for them.
So here we are, 14 surgeries and 22 months
later. The girls are beautiful. They are not completely problem
free, but they have made unbelievable progress. We are down
from over 60 doses of various medicines given a day to less
than 15. Baby ‘C’ (Tina) was born weighing just
one pound and 2 ounces. She is now twenty-one pounds! She
struggles with very low vision, mild to moderate permanent
hearing loss, cerebral palsy, seizures, and significant developmental
delays. She has proved the doctors wrong so many times (as
all three girls have) that we don’t think these problems
will hold her back much all. She is still on supplemental
oxygen, but she is g-tube free, resilient, resourceful, loving,
and happy. Baby ‘B’ (Lena) was born weighing one
pound and 7 ounces (5 ounces of that was excess fluid she
was trying to process as a result of being the major recipient
of the TTTS). She is now twenty pounds! The jury is still
out on whether or not she will need heart surgery to assist
with the severe pulmonary stenosis that was also a by-product
of the TTTS. She has minor vision problems, minor permanent
hearing loss, and significant developmental delays, she is
recently g-tube free, recently free of daytime supplemental
oxygen, curious, social, loving, and happy. Baby ‘A’
(Gina) was born weighing one pound and five ounces. She is
now twenty-five pounds! She has vision problems and is developmentally
delayed, but has just started walking, she is free of supplemental
oxygen, and she is adventurous, resourceful, loving, and happy.
The girls receive weekly therapy visits and although they
are developmentally behind other 22 month olds, we are told
that by the age of eight, their delays will be unnoticeable.
Even in your most helpless moments, never
give up hope. One day, one of the NICU doctors had just told
me that Lena’s heart was weakening from being so overworked
and that she probably would not make it through the night,
that Gina had severe pneumonia and it was life threatening
for her, and that Tina’s oxygen levels were continually
desaturating in spite of being on the oscillating ventilator
and that their last option for her was the ‘jet’.
This same doctor then asked me how it was that I could remain
so calm regardless of how bad the news I received each day.
My answer was that I still have ‘hope’ and I have
my faith in a merciful God and that whether He answered my
selfish prayers to let me keep these girls with me or whether
He took them to be with Him, it would be the right decision
for them. Doctors have a lot of knowledge and talent, but
God is the ultimate authority . . . so, there is always ‘hope’!
We will always be grateful to the TTTS foundation, to Mary,
and to Dr. De Lia. We keep them in our prayers that God might
give them the courage and strength to continue to help those
touched by this disease and that they might share the hope! |
