It
was 3 days before Hurricane Irene struck CT, in August of 2011 and I
was waiting for my Ultrasound. I brought my oldest daughter with me
because I wanted her to remember seeing the ultrasound, in the hopes
that she would always remember that a child in the womb is a real
baby. A person. The team was all familiar. There was the
geneticist, who had tried to tell me to terminate my pregnancy with
child number 4, just because I had a child with renal issues and
didn't need anymore troubles. (My son's story is already on this
website under kidney problems). This very sad looking woman
remembered my as soon as she laid eyes on me. There was the US
doctor, who had found reasons to suggest terminating baby number 6,
but those “reasons” weren't real reasons. She just noticed an
imperfection in that child’s' toes and a dimple in her back. And
there was the US technician. She had joyfully done several other US
for me. In the previous ones, she had talked non stop and was such a
happy presence in the room. She started out bubbling along and
talking to my daughter, Tara and then she became silent. I watched
her go over and over the spine of the baby. She was pressing on my
belly so hard, that I couldn't breathe and it hurt me and the baby.
My daughter was kicking very violently in protest. The technicians
silence became palpable, so much so that my daughter stopped talking
and regressed into herself by pulling her sweater tightly around her
stomach and slumping in the chair. I knew that something was wrong.
I had been through this before 11 years earlier. That time so many
years ago, another medical professional stopped talking and looked
grim, I knew. Time became oppressive and I broke into a sweat
because the prior experience reminded me that I would have to wait
for the doctor to tell me what was wrong. The scan ended and she
ushered my daughter out of the room to watch TV and shut the door and
left me alone for a very long, long time. All I could do was pray.
Jesus, Mary, Joseph give my family the courage and graces to handle
whatever cross you give us and please give me the strength to be
unwavering in the face of the stern and depressing eye of the doctor.
Upon
entering the room, the doctor did not greet me but she did ask me how
my son was doing. She remembered his diagnosis, most doctors do
because his story is extensive. I replied that he was currently in
the hospital at Boston Children's undergoing some treatment but was
otherwise fine. Then she said, “Well the good news is that it
isn't spina bifida but the bad news is that it is Sacrococcygeal
teratoma and I recommend terminating immediately. We can set up the
appointment for tomorrow at my office in New Haven.” What does one
say to that?
I
made it quite clear that abortion would never be an option but could
she please explain this condition to me more thoroughly.
Essentially, my daughter had a tumor-teratoma-growing at the bottom
of her spine. It was whole and not leaking and was growing more
externally and not interfering with the spine or urinary system. It
could grow significantly and cause complications for both the mother
and the baby. She went into great detail about how some mothers have
died because the babies tumor requires such a massive blood supply
but more often the babies die or experience organ failure for the
same reason. She recommended terminating immediately and would not
even allow me out of the room until an appointment was scheduled with
her clinic in order for me to meet with one of her comrades at Yale.
There are 3 things that she did not ever do during this discussion.
She never acknowledged me as a person by shaking my hand or saying
hello, she never acknowledged the baby, and she refused to write down
the name of the syndrome so that I could find information about it
outside of the Yale medical system. In fact, she only mentioned the
name once. As the discussion wound down, I made it quite clear that
our son was in Boston so we would only use doctors from Boston and I
felt it a waste of time to set up an appointment with Yale. However,
they insisted that if I didn't see a doctor tomorrow I might die or
face catastrophic complications. I said thank you very much,
scheduled the appointment, collected my daughter and left. As soon
as I got home, I canceled the appointment because “of the impending
hurricane.”
I
spent the next 10 days dealing with Hurricane Irene and her
aftereffects and then finally got around to calling Boston Children's
Hospitals Advanced Fetal Care Center. The difference in diagnosis
was shocking. The Boston team examined the US and didn't seem to be
all that concerned. They felt that tumor was not going to be a
problem to remove after birth and encouraged me not to worry about
the rare events that sometimes occur with at teratoma. I met with
the team a week later, and underwent more thorough scanning and felt
relieved. The team acknowledged me and they acknowledged the
humanity of my daughter. I remember the US technician telling me
that she had the most beautiful arched feet. The surgeon, Dr.
Buchmiller, is probably the most quietly serene and confidence
inspiring doctor that I have ever met-and we have met a lot of
doctors. Her predictions were completely accurate. She assumed that
the tumor would grow quite large but remain whole, external and not
bother the internal organs and that otherwise the pregnancy would go
to 37 weeks or so. The surgery would be performed once the baby was
stabilized and after 10 days we would all go home.
Well
at 37 weeks, shortly after New Years, we took a long cold drive to
Brigham and Women's Hospital to deliver our 7th child. I
saw her for a second or 2 after delivery before they whisked her away
next door to Children's Hospital to the NICU. Because I was a repeat
C section it was a day before I could see her and try to nurse. But
she was a champ and waited for me. For 2 days she underwent testing
and more testing so that they could have the best possible knowledge
of where the tumor was and how to plan the surgery. We spent those 2
days trying to decide on a name. Finally, we chose Kateri after
Saint Kateri Tekakwitha, because she was so serene in the face of
hunger (they never fed the poor baby but once) and chaos and because
she would be scarred from infancy on.
The
surgery went well and she left the hospital one week after birth,
nursing. She has had no problems since. Kateri is active, normal
and beautiful and such a joy in our family. We could not imagine
life without her. She may require a slight reconstructive surgery
later on, because the tumor was so large in comparison to her but
then again she might not. We could not have been happier with the
outcome or the manner in which Boston Children's Advanced Fetal Care
Center handled the pregnancy, surgery, and recovery.
One
last note, I discovered a few months ago, that my daughter's surgeon
did a study on the difference in outcomes when a family receives
counseling from and OB versus from a palaeontologist or other type of
pediatrician. And this paper definitely seems to indicate that those
who do only listen to the OB about poor prenatal diagnosis are more
likely to terminate than those who seek another opinion.
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