Like every parent we were most excited to be blessed with expecting our
baby, and at every doctor visit we listened with much joy to the heartbeat
of our baby, loud and clear, we never knew "the heart" that brought us
much joy for 9months would cause us much sorrow after birth.
On January 21st 1998 our beautiful precious son Robert Omid was born at
1:15 a.m. in Madison; Wisconsin; U.S.A. and shortly after birth we were
told they heard a murmur in his heart and had to wait until day light to
call the paediatric cardiologist to come and check on his heart, you can
well imagine what we went through, at 10:30 a.m. they took ultrasound of
the heart and told us the result will be out at 6:00 in the evening. It
was 12.30 lunch time the door of my room opened suddenly and 3 doctors
entered the room, Robert my husband was sitting at my bedside, we looked
at each other and knew this is serious. In the meantime my precious son
was in the intensive care unit, the doctor put everything on the table and
told us our precious son had only 2 weeks to live as he was born with HLHS.
We just thought this must be a joke and it cannot be true, thought this is
nothing but a bad dream but alas that was not the case and it was the
shocking reality of our lives being unfolded before our eyes.
The doctor picked up one of the napkins from my lunch table and drew the
shape of a full heart on it then the heart of our son, trying to explain
to us the serious condition of our son's heart, he told us I will give you
3 hours to decide what you want to do with your son: heart-transplant,
Norwood procedure on his own heart which required at least 3 major
surgeries, but he warned us the valve on the right side of his heart was
thickened and he had serious doubts that the Norwood would work on him, or
do nothing. The last option made us very upset, we would give our
lives for our most precious boy to give him a life.
Robert told him can we tell you tomorrow, he said NO, you have only 3
hours
to decide. You can well imagine what hell we went through, trying first to
believe what has happened to our precious son then decide what to do. He
had mentioned 3 transplant centres to choose from, St. Louis; Little Rock;
Arkansas; and Denver Colorado. We looked at the map and picked up St.
Louis because it was the closest of all 3 to Madison, 8 hours drive.
Finally after 3 agonizing hours we decided on heart-transplant. He came up
to our room sometime after 4:00 p.m. and we told him our decision, he
called the St. Louis children hospital in Missouri and told them to put
our son on their transplant list and that we will fly to St. Louis the
next day.
My world was turned upside down! It was the biggest shock of my life
and truly don't think I will ever recover from this shock. He called our
insurance for us and they said OK. to the whole thing, the flight and the
operation and the care for my precious son.
Robert had his lap top with him, he sent an Email to friends & family and
begged for prayers. We got to St. Louis on the 22nd one day after I gave
birth and they told us it might take 6-8 months to find a heart, what a
shock.
Needless to mention my son had a prostaglandin drip. My husband (Bob)
found a room for me in Ronald McDonald House and left on the weekend to go
back to work. I cried a lot seeing him off at the bus station in St.
Louis.
It was 8 hours drive from Madison to St. Louis by car. I cried day
and night at my son's bedside and was totally shocked. The miracle
of God happened and we got "the call" on Feb. 3rd at 9:00 p.m. Dr Canter
told us, "we are going to do the transplant on your son tomorrow" I
almost passed out, I just could not believe it, and asked him please talk
to my husband.
10 days after we had put him on the list our son got his 2nd chance at
life and had the heart-transplant when he was only 2 weeks old on February
4th. His second birthday to us. He had a rejection few weeks after
the transplant but they treated it with powerful Adgam or adcam and we
finally took our son for the first time home to Madison on March 5th.
We made many trips to St. Louis for the next 18 months of his life for
biopsies, but stopped them after that, he is now 4 and the love and light
of our lives and his dad has been calling him "Sunshine" from the minute
he opened his eyes at birth and has been singing for him the "sunshine
song" ;-) ever since. YES he is for sure our Sunshine!
I have shed oceans of tears for my precious son and just HOPE & PRAY that
God's Miracle continues and He let us have our most precious son with us
as every second of his life he is very precious to us.
We moved to Australia about 19 months ago to be close to my brother &
sister and their families. I have not yet met any transplant kids in this
country, maybe some day. I heard there are only 40 of them here.
I feel very blessed to be on the transplant list on the internet; it is
extremely helpful to me to know that I am not alone and I very much
appreciate the support. I take this opportunity to tell you all that I
have read all your stories and have shed tears at my keyboard and remember
all those beautiful kids who are now in Heaven in my daily prayers. Best
wishes to each and everyone of you brave parents of these SPECIAL kids.
"Our Sunshine"
