a family story

[Guest guest]

Dear , Lydia, and Bonnie,

Thanks ever so much for your kind thoughts. Being new to the list is

still a bit ackward for me, but it feels wonderful to tap into a

support system without the social repercussions that usually occur

when you talk to NON-CHARGE families about " what's happening " .

Thanks for being here.

Molly's hearing has not changed. Tomorrow, Wednesday morning, we'll

return to ENT and I'll post a note about what's going on.

I am working on records and a timeline of past histories for my

doctors and my support group. This has become a long and involved

process. I'd like to share the part of my life where my CHARGErs

joined me with you. WARNING: It's long.

Labor Day Weekend, 1983 - pun intended

It began with a tubalplasty (repair surgery) which was

necessitated by a ruptured ectopic pregnancy occurring the year

previous. I had finished my Bachelor's degree and was working on

another when the " appendicitus " occurred, demanding surgery.

Afterward, we changed our minds, and really wanted to start a

family. I was 34 and my husband, 35. The clock was ticking. It was

now or not at all. Otherwise, we had a normal pregnancy.

Mild labor started late Friday afternoon. By Saturday, I had

progressed to the " let's go to the hospital now " stage and was

admitted. There, my water broke and normal labor progressed.

Finally, shortly after midnight, I was wheeled to the Delivery Room

when it became evident something wasn't right. They tried a " pit-

drip " , turning the baby with forceps. Finally, a C-Section was

performed as the baby's head was too large for me to accomplish a

vaginal delivery.

Rose Hennessy was born at St. 's Hospital, Duluth,

Minnesota, on September 4, 1983 at 5:05 a.m. LABOR DAY. She was 8

lbs 5.6oz., 22 " long with a head circumference above the 100% range.

I was recuperating from the anesthetic but ecstatic with joy over

this beautiful perfect baby who joined our lives. The next day, this

changed 180 degrees. A very attentive nurse noticed that 's

muscle tone wasn't what it should be and that she was a bit

cyanotic. The first tests began. Over the next few days we were

told that she was totally deaf, had porencephalic cysts in her brain,

very low muscle tone and would probably never develop normally

physically and mentally. The picture was painted: a child never

hearing, speaking, walking and mentally " retarded " .

devastation

I left the hospital long before , and began in earnest

the transition from the past life to the present - whatever it

takes. We began physical rehabilitation several times a week at

Polinsky Rehab Center. There were many, many clinic visits, being

sick most of the time, and that was just the beginning of it. I do

recall one doctor telling me: " you know, she will never be normal,

don't you. Why are you trying so hard? "

American Sign Language Classes began 5 months later, when she

got her 1st hearing aid with the help of the SKI-HI people. By then,

a second BAER test showed a profound loss in one ear and nothing in

the other. We chose to aid just one ear as the aid itself was

physically difficult to keep on her somewhat " floppy " ear...tape

worked for awhile. joined Mom and Dad at the Community

Education sign language class with the other adults in the room. She

watched tentatively with her head propped between two towel rolls,

and we began signing and voicing to her everything we did. When

was 7 mos. old, she was signing: " Dad " , " Mom " , " milk " , " eat "

and " ball " .

Very impressive for the child who would never...

We struggled through alot: feeding difficulties, projectile

vomiting, inability to hold her head up, sleeplessness, " scooting " on

her tummy or back, the willfulness and anger, her determination.

Stubborn: she was so stubborn, she wouldn't come out to be born...

At 1 year she began crawling, holding her head up, but still

preferring the 3-point scooting on her back: 2 legs and head. She

loved being up-side down and the johnny jump-up, and wearing her

favorite blue stocking hat - all of the time.

At 14 months, she voiced her first word: apple. Go figure:

a two syllable word for a " first word " . Unbelievable. So much for

prognostications. I'm sure the doctors were just trying to be candid

and cover all the bases. I'm even more grateful that I could rise to

the challenge instead of giving up before the battle really began.

We continued with the sign classes, the SKI-HI intervention and the

physical therapy. My husband traveled alot for his job, but life was

becoming manageable.

The first of the next year brought us a surprise - we were

pregnant again.

I was very worried. never really had a " diagnosis " per se.

Worrying about a repeat performance, I sought out lots of OB

opinions, Geneticists said it was a " fluke " and would never happen

again. Ultrasound, amniocentesis, blood work, spinal fluid, all came

back negative. I hated being put into the position of choosing

whether to continue a pregnancy - I think there is no decision more

difficult - ever. We chose to move to St. , the schools and

medical help were " better " and we could be close to family for

support.

Why is it you always move to another home when you are 7 months

pregnant?

had a second round of pneumonia 1 month before my due

date. I was kidding the nurses taking care of her, we would be back

in a few weeks with another one. On her 2nd birthday, we had an " in

your own time " moment - she took her first steps. I wouldn't have to

carry 1 in each arm after all.

Molly was a scheduled C-Section, to avoid a repeat of the

previous delivery. She was delivered, after a delay of one day, on

September 17, 1985 at 5:05 p.m. There were problems almost

immediately. APGARS were low, she was cyanotic, put on oxygen, she

couldn't coordinate suck swallow breath functions, and aspirated on

day 1. She couldn't breast feed. More tests began. I was crushed

when they took her to intensive care. What I do remember about the

next two weeks was trying to explain to the doctors that she was just

the same as her sister. They didn't concur. They also wouldn't let

us bring her home until we told them we were transferring her to

another hospital in the area. At that point, they insisted she go

home on a monitor, gavague (sp?) feeding (through her nose with a

tube) and weekly visits from the county nurse at home, and back at

the hospital to monitor her progress.

I remember the leads always coming off, setting the monitor

beeping. I remember Molly crying each time I put the tube in her

nose to feed her, and how helpless the situation was for all of us.

One day, the power went out from a huge thunderstorm. Molly was

hungry and I couldn't see with a flashlight well enough to insert the

nose tubing. Dad was out of town again. Molly was losing weight and

the doctors were sure I was starving her on purpose. We were so

frustrated ... I just got fed up and said - " Molly, we are going to

start bottle feeding right now " . Slowly, just one suck at a time,

removing the nipple after each suck ... we spent a good half hour

getting 3 oz. of formula in her stomach ... but she did it (the

mantra: in her own good time) and she didn't aspirate. WHAT A

BLESSING.

We've struggled through years of hospitalizations,

operations, therapists. Molly started her education at the Como

Parent/Infant group at age 6 months, their deaf/blind group.

Sometimes we mixed with the hearing impaired kids, including her

sister. It wasn't until Molly's 3rd year at Como when I met Sally

Prouty, the mother of another child in the deaf/blind program who was

a bit older than my two girls. She was listening to my reciting the

list of medical issues for each of them while we were waiting for our

support group to convene.

: Hearing impaired - moderate/profound loss L ear;

no hearing R ear.

Gross motor delay

Fine motor delay

Colobomas

Narrow nasal passages

Feeding difficulties

Balance difficulties

Delayed growth

.... there were minor problems, i.e. heart murmur, which didn't really

mean much at that time, being overwhelmed by the medical priorities.

and later:

Encopresis

Asthma

Behavior difficulties - ODD (oppositional defiant

disorder)

Molly: Hearing impaired - moderate/mixed loss R

no hearing L ear.

Gross motor delay

Fine motor delay

Colobomas - vision field loss

Poor acuity

Narrow nasal passages

Feeding difficulties

Pneumonia (4 times in 1 year)

Poor balance

Heart murmur

and later:

Kidney: 1 small, non-operational, 1 scarred from

infection 80% operational

Reflux - many bladder infections

PE Tubes X 3

Asthma

Enuresis

social difficulties

Sally told me their list sounded alot like her 's

problems and that he had a diagnosis of CHARGE Syndrome. It was the

first time I'd heard of CHARGE.

The insurance company was having trouble paying the bills for

some of the tests the doctors ordered. There wasn't a diagnosis to

justify the tests. I figured it was time to pursue the issue and

began a campaign to " enlighten " the doctors, starting with the

medical library. I brought my findings to them. The genetic doctor,

in particular, took offense that I would tell them their job and

obviously I hadn't a clue. It turned into a political game which I

am reeling from still.

A year later, when Molly was 4, there was a visual screening

project held at Como which she took part in. We met Dr. Davenport

and within 3 minutes she said, " Molly has CHARGE, doesn't she? " I

related my story of ineffectiveness with the doctors. She took a big

chip off my shoulder, all within 3 minutes.

The story doesn't end here. Our family didn't make it

through intact. After years of doing what needed to be done, mostly

on my own, I began to need emotional support which wasn't available

to me through my workaholic husband. He paid the bills and made a

very good living, but was too tired to talk or play with us. It was

when I kept track of the number of words we spoke to each other, that

I was astounded at how unavailable he was, both emotionally and

physically. His alcoholism was another issue altogether. He is a

good man, just not " Mr. Right " when push came to shove. Then came the

PMS when I literally was up in the middle of the night throwing

things, not knowing why. He refused counseling after the alcohol

assessment, and refused marriage counseling for us.

I gave up. I had 2 children with disabilities - I needed a partner

who was part of the solution, not adding to the problem.

There's been a divorce, a remarriage, a stepfather, a

stepsister (who is wonderful but chooses to be unavailable because of

's ODD) and their paternal father's remarriage. A stepmother who,

even though she is a psychologist, has no time to educate herself on

CHARGE, or patience to allow the girls to deal with their problems in

their imperfect way. We've tried 2 years of boarding school. Years

of family therapy and an average of 2.5 doctor/professional visits

per week.

It's tired out.

and Molly continue to astound me:

is in 10th grade at Highland Park Senior High in the deaf/hard

of hearing classroom and has a few mainstream classes once in a

while. She's doing great academically and making friends with her

deaf peers. She has been babysitting for about 6 years, and is in

constant demand from all the Mom's belonging to her church. She is

planning on going to college and getting a degree in childcare.

Molly is in 9th grade, joining her sister at Highland Sr. Hi - this

is the first time they have been in the same school, ever. She is

having a lot of trouble adjusting to the new school socially. She

complains about " cliques " and missing her friends. She is very timid

socially, just the opposite of her sister. Academically she is

working up to her potential, mostly B's.

Two weeks ago, Molly was swimming on Thursday evening with

her swim club, and proudly told me of her first attempt to dive off

the " block " they use to start their competition races. Her attempts

are literally taking a " leap of faith " as she can't see the water

from her standing position. I asked her how it went. Molly

replied, " I did it ... sort of. " The next morning she began

complaining that wax had built up in her ear canal. We started

cortisporin to help break up the wax. Then on Tuesday, before

Thanksgiving, we got into the ENT. He cleaned out her ear and Molly

was hearing fine - for about 4 minutes. While waiting for the

elevator, she suddenly said: " I can't hear anything. " We went home,

hoping it was temporary.

Wednesday morning, she went to school, unable to hear, even

with her aid. After a morning of scrambling to contact ENTs and

AUDIOLOGISTS...

I won't mention the pumpkin pie on the bottom of the oven, turning my

house into a smoky cloud with black ceiling soot; the lost key ring;

the backed-up toilet; the teacher calling complaining about Molly's

aid being broken; and the upcoming stress of trial by out-of-town

relatives occurring the next day...

....I got Molly in the Clinic again at noon. Her ears were clear, the

audiogram was normal, but her hearing test showed a loss of 45

decibels on top of her " normal " loss. We tried to reprogram her aid

to give her a little help, to no avail. Our ENT put Molly on

steroids and is currently treating her with a viral prescription

which is making her stomach upset and interrupting her sleep

patterns. He says that he is not sure what is going on and that her

hearing will return or it won't. In the mean time, we scrambled for

interpreters for her mainstream classes and continue as though

nothing is different. Molly says she wants to learn ASL - finally

she has had a change of heart (her embarrassment) by necessity. She

is scared this loss is permanent. We go back to the ENT on Wednesday

morning. Hopefully we will know more than we do now.

It's been a very bumpy road. One thing I'm sure of, it's TO

BE CONTINUED

Thanks to all of you for being there.

Smiles and Hugs - joey blanchard