by his Mom - Melissa
the first Glanzmann's patient his hematologist ever diagnosed. We
were sent to a hematologist at the University of Massachusetts Medical
Center in Worcester, Massachusetts who had a few other Glanzmann's
was born on April 13th 1992. He was pretty bruised up after
birth - he was a large baby and was delivered with forceps.
He was circumcised and there was some blood in his diaper
afterwards. I brought his diaper to one of the nurses who
said sometimes that happens. Looking back, my "mother's
intuition" was already kicking in -I knew something
wasn't quite right.
was diagnosed with Glanzmann's Thrombasthenia at about 8
months of age. His shins were bruising when I took him out
of his baby swing and his pediatrician was concerned.
sent to a hematologist at Baystate Medical Center in Springfield,
Massachusetts who did platelet aggregation studies to diagnose
doctor tried to explain to us what to expect, but also told us
it is impossible to know what to expect as each Glanzmann's patient
challenges have been nosebleeds and anemia. We have tried packing
in the emergency room, laser treatments to seal off the larger
vessels in his nose, cauterizing, nasal sprays, pressure, topical
thrombin, surgicel - you name it! Sometimes we are successful
in stopping his nosebleeds, sometimes it takes days. He has also
needed red cell transfusions and platelet transfusions for a fall
he took as a toddler and for a GI bleed he had around age 6. He
lacerated his tonsil once while eating potato chips and needed
a "stitch" to stop the bleeding.
We were reported
to the Department of Social Services once when he was a baby.
That was devastating - every second of every day since Peter was
diagnosed we tried to protect him from physical harm and we were
accused of harming him.
is a thriving 14 year old. He is a competitive swimmer and tennis
player. Swimming has been important for him in many, many ways.
He is in excellent physical condition which in turn helps him
to prevent bleeds and stop bleeds. Peter has three siblings that
do not have GT - we know one is a GT carrier through flow cytometry
testing that was conducted on his blood a few weeks after he was
born. We don't know if his two other siblings are carriers or
not, we had them tested for GT a few weeks after birth but never
tested them for carrier status.
One of the
happiest days of my life was when I found the Glanzmann's Thrombasthenia
website. Networking with other families has been invaluable. I
can't even put into words how important the website, the research
foundation and Helen Smith have become to our family. We stored
our youngest son's cord blood after birth and are hopeful between
the research now being conducted on Glanzmann's Thrombasthenia
and the cord blood some day a cure will be found for Peter and
all the other GT people out there.