Heaven’s Very Special Child – Mandy – Part 4 of 6 – Nan’s re-blog

A congenital heart defect was noted during Mandy’s first office visit. Again, I asked if there was any treatment for it. “It’s a terminal condition, usually, by eight or nine.”
The words were so frightening to me that I gave up my Graduate Teaching Assistantship for one quarter, and only took one course that spring. Mandy was bundled into a laundry basket with a clear plastic cover, and taken to a friend who watched her while I was in class. This same friend had treated my husband and me to a dinner at Everybody’s restaurant while she stayed home with Mandy and mopped my kitchen floor. With such good friends, anything is possible!
One of my professors told me about an acquaintance who used to say that if he ever was reincarnated he wanted to come back as a Down’s baby. I suspected he was lying. Later I was able to see his point.
The young mother of a mongoloid boy in my church came to call, with informational articles on Down’s syndrome and community resources. Through her we very early were connected with the Elaine Clark Center in Atlanta. Mandy was less than three months old when we began a parent’s group with other parents of variously handicapped children, of different ages. When Mandy was born I had thought bitterly that “No one had better tell me I should be glad it wasn’t worse,” but gradually I came to embrace that belief.
Mandy and I were vacationing with friends in North Georgia in September, when she developed a high fever. It was Sunday, and we drove to the nearest hospital. The on-call doctor listened to her chest, and his expression tightened. “She has pneumonia. These children bring so much sorrow and hardship on their parents and families.” He was angry. It was obvious that he thought she had no right to live. He gave her a penicillin shot, however, and her pediatrician met us at his office in Atlanta and hospitalized her. She was packed in ice, and I had my first of several hospital experiences with her. The helpless pain of seeing one’s child in a foggy oxygen tent, out of physical touch was wrenching. Miraculously, she recovered.
She was back in the hospital with pneumonia New Year’s Eve. The life or death struggle was wearing on us all.
The most painful hospital visit of all was her overnight stay in intensive care, after having gotten into her Lanoxin. She had just learned to navigate around the room, and I had left it out. The torment of that particular night was my guilt. Thankfully, again, she pulled through.
I had had sufficient extreme anguish in the intensive care waiting room thinking of her being isolated with strange faces and stranger machines. I knew she would be terrified. The next morning they allowed me to peek in. She was sitting up, held by a nurse, eating breakfast with vigor, and happily waved to me while she continued eating. That, too, was a lesson.
Mandy was four when she and I visited a planned community in the mountains of North Carolina, preparatory to possibly moving there. A local doctor had a cabin for rent. I contacted him by phone. I explained my circumstances and mentioned Mandy’s heart condition. “It’s terminal.”
“What kind of condition?”
“The usual defect associated with mongolism.”
“There’s an operation that’s been developed for endo-mitral valve defects, the most common heart defect with mongoloids.”
He gave me a name to contact and so it was that, living as I did about three blocks from Emory University’s Eggleston Children’s Hospital, I learned that treatment for Mandy’s terminal condition was available from a doctor in my own neighborhood. But it had to come from an unknown doctor in a tiny backwoods mountain community. Such are the mechanations of fate.
Our pediatrician was re-contacted and referred us to the Scottish Rite Hospital in Atlanta and a heart catheterization was scheduled. It might be too late for the operation. In order for it to work, it had to be performed before a certain point had been reached. They thought it was quite possible that Mandy had reached that point.
Time dragged. The delay of the catheterization, then the delay of feedback of the results. I was prepared for the worst. Surely they would not delay good news for months!
The news, when it was finally delivered, was good. There was still time for the operation. I met with Dr. Williams, who would do the surgery. “Mrs. Mykel, I won’t lie to you. Her chances are 66 to 33 of Mandy making it. There’s 33 chances out of 100 she won’t. Your alternative is to watch her growing weaker and blue and she’ll finally die. It can be pretty hard on the whole family to live through that.”
I knew I couldn’t take it. “I want the operation.” During those days I couldn’t discuss anything about Mandy’s illness without crying. Once when I called the nurse for admission details, I was almost unintelligible. Obviously this was quite frightening for the other children, as well.
Mandy went into Eggleston Children’s Hospital 3 blocks from our home in Atlanta on February 2, 1977. The night before her open heart surgery, parents of another child who had undergone open heart surgery and survived visited us in the hospital. They described the procedure, what to expect and how I would learn the results. They told me that the most dangerous time was when the heart needed to take over on its own again, at the end.
Heidi visited both me and Mandy the day before the operation. She had a huge Raggedy Ann doll she used to demonstrate the scar stitches, and the drainage tubes to expect. For some reason I never understood, Mandy’s chances for survival changed the night before the operation to 50-50. Dr. Williams explained that if she survived there was no guarantee that her heart was reparable. It all depended on whether there was enough tissue in the right place to use in repairing the valve.

Mandy

Mandy

Early the next morning a tall orderly wheeled tiny Mandy off. This was it. I might never see her again. I stepped toward the elevator in time to see the elevator doors close. Only the little red top of her head was visible for a moment and then hours followed upon hours, when friends, knowing how long the wait would be, sat with me. About five hours later, Dr. Williams appeared with a smile on his face. “She’s doing fine.”
The parents who visited prior to the operation hadn’t told me in so many words about the 24-hour crisis period following the operation. I happened to be in the area each of the two times that Mandy’s heart stopped following surgery. It was successfully massaged back to life. Mandy is well now and has made up for her earlier frail stature due to her bad heart. The pneumonia vaccine has been developed and she hasn’t had a bout with pneumonia for four years, [make that 40 years] and then it was only “walking pneumonia.”
What of the life ahead of her? She’s moderately retarded, which means she can never be totally self-sufficient. On the horizon will be decisions about sterilization, an ethical question I would rather not have to deal with.

to be continued

About Nan Mykel

I used to think I would be a child prodigy, but then I got old. Formerly I had fantasies of rubbing elbows with cultural and academic leaders but that did not come to pass because I did not become a cultural or academic leader or any other kind of leader, for that matter. I am not even an "Alpha Dog," a term learned from a friend who had to become "Alpha Dog" in order to influence her own pet. (When gazes lock, she never looks away.) For years I expected to become a published author, but in passing I could not avoid the fact that I had little to contribute to the world's bulging dumpsters. I'm embarrassed to report that I also considered my primary process artistic productions powerful, rather than mildly neurotic. Which is not to say that I disrespect myself, only that I am beginning to doubt my potential for making a mark on the world. If I focus on strict self discipline I may be able to keep my garbage removed on a weekly basis, to keep the kitty box changed, the clothes cleaned, the dog watered, fed and walked, but that just catches me up to the starting mark again. When writing I physically grapple with words, wrestling them from their indifference into attempted chunks of awareness. I sit heavily on my chair; I breathe in artificially cooled air; my ear drums note the tap tap of the keyboard and the steady uninterrupted sound of the air conditioner, What is that sound? The roar of the ocean from 30 yards away...Inside, my thoughts are are balls in an electronic game machine, bouncing hither and yon from lever to lever. I am a little grim and intent until I recall a dream related by a black man in the prison where I once worked. He said that when he was a small boy, back home, he dreamed he was standing on his front porch pissing, and that he suddenly found himself pissing stars...
This entry was posted in A mixed bag, Down's Syndrome and tagged . Bookmark the permalink.

Please share your own experiences here...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.