We would like to introduce everyone to 2 of the
strongest, most loving children we have ever
known. It has been a trying 9 years, but out of
that time a very close family has been formed.
Our first daughter, Jordan, was born June 11,
1996. I carried her full term at age 36, and we
were blessed with a perfect, beautiful little girl.
I had a mostly normal pregnancy, except for
gestational diabetes, and a few panic attacks.
Jordan liked to sit very high, and I suffered
from Sinusitis constantly, not a good
combination. She was delivered by cesarean
section, due to lack of dilation which caused
her heart rate to drop. Prior to any difficulty, the
decision was made to go ahead with the Csection.
Jordan breastfed without difficulty slept and
interacted normally until day 3. That morning
she started to breathe a bit heavier, and started to
sleep more. When the nurses took her down for
her discharge physical, I voiced my concerns.
We got ready to leave, and a couple of hours
later, an alarmed doctor came to the room to
speak with us. They had attempted to move her
into the NICU, but they had no beds available,
and were planning on moving her to another
hospital. By the time we arrived in the NICU, she
was in an isolette, ready for transport.
Our miracles started there. They wanted to
move her to John Hopkins Bayview, a satellite
of the main hospital. We had not wanted to let
her go there because of previous experiences,
and only gave in when the Dr at Bayview asked
to talk to us on the phone. He said, “Let me
take care of your daughter.” The attending
physician happened to be a metabolic specialist
named Dr Alpan. He met us at the door, and
told us he thought our little one had a
metabolic disorder, and if she could hold her
own for the next couple of hours, he would do
everything he could to pull her through.
Jordan’s labs came back with ammonia of 1050,
and off we went to John Hopkins main
hospital, where a team met us again. Jordan had
a line placed, and she held her own through the
hemodialysis. She stayed in the NICU for the
next 3 weeks, and day by day blossomed back
into the little girl we had let go for a discharge
physical at 3 days old.
Jordan’s first 3 years were, looking back now,
fairly uneventful after a rough start. She had a
few admissions a year, for
dehydration/gastroenteritis, but otherwise had
no developmental delays. She walked and
talked on time, and was normal other than
regulating the protein intake. She drank her
formula from a sippy cup and attended regular
preschools.
Since then at about age 5, she was diagnosed
with kidney problems. She would be admitted
for dehydration, although nothing in the daily
routine had changed. In many talks with her
Drs, we figured out that she was not
concentrating her urine. No one ever asked the
right questions. You go to the ER, they asked if
she had been peeing, but we never thought
about the color. No matter how hot it was, it
never got any darker. Since then, she had been
categorized as having kidney failure (ESRD),
although currently her creatinine level has hit a
plateau at 2.1. Jordan has a history of chronic
pancreatitis, one admission lasting 45 days,
after a shortened Make a Wish trip to Disney.
After doing an ERCP, they found a rare defect
called an annular pancreas. They did a rework
of her intestines around that defect and since
we haven’t had one episode.
Jordan caught the flu in January of this year,
and suffered a stroke. She initially couldn’t walk
or talk, but has been very determined as usual,
and is now talking very well, and although
quite dystonic in her lower extremities, has
been walking pretty well. She has balance
problems along with the dystonia. Her Dr’s are
recommending botox injections to help with
that.
All in all, Jordan is so strong. She never
complains, except for when she gets cramps in
her feet at night (we’re told it’s a kidney failure
symptom), and has worked very hard to keep up
her schooling. She missed a half of the 2nd and
3rd grade, is in extended school year for the
summer, and will attend the 4th grade this year.
JENNA , our second daughter, was diagnosed
prenatally. We hadn’t planned on a sister for
Jordan, but Jordan was wishing really hard for
one. She got her wish, on 5 June 2001. Jenna
was born at Hopkins, after a normal pregnancy.
I was 41, but didn’t have any gestational
diabetes or panic attacks with her. She was
immediately placed in the NICU, was by all tests
a perfect little girl. They put her on the required
meds, and restricted diet and we took her home
within 1-1/2 weeks. Jenna’s first year was an
easy one. The usual admissions for vomiting
and dehydration. but by 2 was already
diagnosed a few times with pancreatitis. She has
been through every test and scope there is, and
she doesn’t have any defects in her digestive
system or pancreas. Jenna is now 4, and has
spent many days as an inpatient. She is
significantly delayed; we think she is going
through 2, 3, and 4 now. We have her placed in
a restrictive school now, so she can learn some
social interaction skills, but can’t keep her well
enough to keep her there. She was in a different
school last year, less restrictive, and she wasn’t
very cooperative. She missed 2/3’s of the year.
Jenna has had a stretch of admissions for the last
2 years that have added up to over 40 some.
One or two weeks in, 2-3 days at home, back in.
Recently, we had almost 5 wks home (one
overnight admission to hydrate her), but ended
with another almost 3 wk admission. She came
home 2 days ago, after spending a week of that
in the PICU. She has a pattern of stop eating,
stop pooping, and start vomiting. We have tried
lactinex for belly bugs, augmentin,
erythromycin (back on that one again), and
baby food. Jenna always has multiple loose
stools, but after trying to add fiber/pectin with
baby food once a day, she became impacted.
That got her a ticket to the PICU. She was
hypertensive, her glucose increased and
required an insulin drip, and her lipase/amylase
levels went high enough to again diagnose her
with pancreatitis. Jenna is also very anemic. Her
hematocrit/hemoglobin levels drop to nothing
when she gets sick. She has had 7 transfusions
already this year. Her last 2 admissions her liver
enzymes have sky rocketed, but scans of her
kidneys and liver show nothing to be concerned
about. Any suggestions/referrals/information on
any of these mysteries is welcome. Her Dr is the
most wonderful woman, and is one of the
smartest people I’ve ever met. She tells us
everything, and admits to being puzzled. We
have consulted with every other service in the
hospital and still have many questions.
Jenna has had a rough life. She speaks very
clearly most of the time, but only says things
when she wants to. She walks like a toddler,

wobbly a lot, and we won’t let her on steps
without assistance. She demonstrates echolalia
and developmental delay. She is lovable, and
determined. She gets into everything, but
definitely has a world of her own. We can’t
blame her for shutting people out; she’s been
through a lot.
Both girls have portacath, they are both g tube
fed 24 hr/day using the Enterite pump, and
allowed 4gms of protein per day. Their formula
is Pediatric Vivonex, H2O. Polycose is added
for one, not the other, and their meds. Jordan
gets over a gallon/24hrs, Jenna 1/2g/24hrs.
Meds include, Bicitra, Carnitine for both -
Polycitra K, Claritin, E-mycin, and miralax for
Jen. Epogen, Atenolol, extra salt, clonzapam,
and Artane for Jordan. Both girls have a low
heat tolerance and a natural aversion to foods
that contain protein. Jordan complains about
the smell of cooking meat, so we grill outside
often. They both seem to prefer certain food
textures, and like salty/sour taste rather than
sweet. We also have to watch fat content due to
their history of Pancreatitis.
We refer to our girls as “high maintenance”; we
are always exhausted, but wouldn’t trade them
for anything. We are proud of them both, for all
of their strength. When we wonder how we can
keep going, we look at the strength they have
and we know we can do it. They are wonderful.
At the end of each day, when we put them in
their beds and they say “I love you”, it’s all
worth it.

Joey and Kathy McCann
962 Elton Avenue
Baltimore MD 21224-3332
410-574-2263
kathymccann@comcast.net