Another Day, Another Challenge;
The Biography of a Child with Williams Syndrome
Chapter 1
Something Different
She started crawling at eleven months and sat up by herself shortly thereafter.
She took her first unaided step at twenty-five months.
She said her first word at two-and-a-half years old.
She finally talked in complete sentences at age five.
Even in the womb, my daughter’s growth and development showed delay. Though I ate healthy and gained twenty-eight pounds during my pregnancy, after two ultrasounds, my obstetrician expressed concern at the delayed growth rate of my unborn baby.
The youngest of three children, Michelle Marie Strebe came into this world on October 24, 1984, in Valdosta, Georgia. Tests verified she was full term, and our tiny newborn left the hospital at three days old, weighing slightly more than four pounds. She was born with a heart murmur, common for a baby with Williams syndrome, and she visited her first cardiologist when she was just three months old.
By then, I realized she was not following the same rate of development as her two older siblings. She took twice as long to reach each developmental milestone; I didn’t know why. Michelle still displayed newborn characteristics. She clenched her fists, throwing out her arms and legs, screaming sheer panic when I undressed or bathed her. She didn’t outgrow this until she was five months old. That concerned me.
Orders to Greece
My husband, Floyd, served in the United States Air Force. In 1984, three weeks before Christmas, he received orders to report for duty in Greece by February 12, 1985. We scrambled to get things done.
The military base told him our family didn’t need visas to enter Greece. Michelle had just started sleeping through the night when we shipped our household goods on January 6. I didn’t realize a little baby could be so in-tune to changes around her, but she resumed waking in the middle of the night.
Near the end of January, we received a call from the base asking if we had our visas yet. Visas? That put us in a crunch, and we tried to rush them through. No chance, and Floyd was forced to travel ahead without us. When he left, little Michelle returned to waking in the middle of the night because the slightest change in routine caused her stress. Later, we discovered we didn’t need visas to enter Greece. We could have applied for them when we arrived.
I finally left Valdosta to join Floyd in Greece. Due to the base’s mistake, I flew alone with three small children, ages four, two, and five months. I nearly lost two-year-old Jamie in New York when she got scared and bolted into a crowd of people. Heavily weighted down with Michelle in her infant carrier and our carry-on bags containing diapers, bottles, formula, extra clothes for the kids, snacks, money, passports, etc., I couldn’t catch up with my frightened toddler. Seeing Jamie bolt, the man on the airport trolley motioned for an approaching security guard to grab her, and he brought her back to me.
For the eight-hour flight from John F. Kennedy International Airport to Athens, Greece, Michelle was supposed to have her own seat. Since the military goofed and didn’t pay for hers, I held her the entire flight. I sat in the middle seat, Jamie by the window, four-year-old Toby near the aisle, the dinner trays down (because we were eating), and my infant on my lap under my tray. Then Jamie announced, “Mommy, I have to go potty.”
I called the stewardess and asked if she would take Jamie to the bathroom for me. “Do it yourself. That’s not my job!” she snapped. Fortunately, other passengers cared enough to lend assistance.
The Battle of the Infant Carrier
We finally joined Floyd in his hotel in Greece. Although we had a crib for Michelle, she wouldn’t sleep on the crib mattress. For nearly two days of travel, our baby daughter was either in my arms or in her infant carrier. Her bed changed so many times in the last month, her only stability was that infant carrier, so I simply set the occupied baby seat in the crib when I went to bed.
We stayed in the hotel for so long Michelle accepted it as home and once again began sleeping all night. Five weeks later, when we finally moved into a house, our six-month-old resumed her middle-of-the-night sessions.
Meanwhile, Floyd checked on our household goods. We expected delivery in two months since it was transported by ship. When our shipment didn’t arrive on schedule, the military traced it back to Valdosta, where it was put into storage while we sat and slept on the floor waiting for our visas. The movers finally delivered our furniture to our house in Greece six months from the day they packed it up, and Michelle, now seven-and-a-half months old, resumed waking in the middle of the night.
A happy baby, Michelle never manifested stranger anxiety. From infancy, our daughter cherished new faces and new people, which is characteristic of Williams syndrome.
Finally settled in our new home, I struggled unsuccessfully to get her on a set bedtime schedule. Night after night I walked the floor with her screaming in my arms, sometimes as late as midnight. Thoroughly exhausted and frustrated, I found that to be the only way to get her to sleep. (I have since learned that infants with Williams syndrome often have a high calcium level that causes extreme irritability, but by age two, they usually outgrow it.)
A few times, I simply laid Michelle in her crib. She screamed nonstop. I expected her to give up the fight sooner or later and fall sleep, but after an hour she was still going strong. No one could sleep, least of all Jamie, who shared her room, and I couldn’t tolerate it any more. I scooped the baby out of her bed and she screamed all the way down the hall to the kitchen, where I’d left her seat. The instant I set Michelle in her infant carrier, she quit crying. Within minutes she was asleep. Carrying the baby seat into the girls’ bedroom, I set the whole thing inside her crib and went back to bed.
I tried desperately to get her out of that infant seat, but she screamed in panic if I put her on the floor to play, in a playpen, or in a crib. If she wasn’t being held, the only place she felt secure was that baby seat. She practically lived in it until she finally outgrew it at nine months old. Still quite small for her age, she now started to sit up. At last, I could put her on the floor without her screaming.
Michelle learned to like the floor. Unfortunately, she spent more time falling over and smacking her head than actually sitting up. It proved hazardous. So I’d make a circle of pillows and plop her into the center of it with some toys. Then when she fell over, she had a soft landing.
From the time Michelle was three months, I suspected something was wrong. Since all babies develop at different intervals and the pediatrician showed no concern during her routine exams, I thought it probably wasn’t anything to worry about. Except for her heart murmur, which the doctor anticipated she would outgrow, she seemed like a healthy baby. I knew her development was slightly delayed but expected her to eventually catch up; therefore, I didn’t take her to the doctor for it right away.
At eleven months old, Michelle started crawling, and by her first birthday, she no longer toppled over when sitting up. No more pillows.
From Banana to Peanut Butter Diet
Michelle’s diet was a major challenge in itself. She ate strained bananas and sweetened baby cereal. She completely refused everything else. I switched Toby and Jamie from strained baby food to blended table foods at six months of age, but Michelle wouldn’t eat table food – not blended or whole. She had a few teeth but she refused to eat, which is very typical for a child with Williams syndrome.
At her one-year checkup, she weighed a meager fifteen pounds. The pediatrician chewed me out for neglecting to properly care for her. “Don’t you know that a baby’s birth weight should triple by the time they’re a year old?” he yelled.
I didn’t know, but it made no difference. I did the best I could to meet her needs. Anyone who believes a baby can be forced to eat foods they don’t like has never tried to feed a disagreeable baby. The food winds up splattered everywhere. You seldom get any of it into the child’s mouth.
Upset by the doctor’s accusation, I responded, “Well, if you even bothered to look at her records, you’d see her birth weight has more than tripled, because four times three is only twelve.”
Because doctors did not understand Michelle’s condition, they automatically blamed me for her failure to thrive, so dealing with the medical field intensified my frustration.
Early in her second year, a friend introduced her to her first peanut butter and jelly sandwich. Since peanut butter is sticky and gooey, I feared she would choke on it, so I didn’t give it to her. At that time, I didn’t know she had Williams syndrome, and children with WS love peanut butter. That sandwich revolutionized her baby cereal and strained banana diet. From that moment, she ate peanut butter and jelly for every meal. No more bananas! (To this day, Michelle won’t touch a banana.) She wouldn’t eat oatmeal, Cream of Wheat, SpaghettiOs, mashed potatoes and gravy, or even applesauce, but she still ate sweetened baby cereal for breakfast. I tried to encourage finger foods like Cheerios and grilled cheese instead of peanut butter, but Michelle refused everything else.
Concerned about her poor diet, I mentioned it to her pediatrician on the military base. He instructed me not to prepare her preferred foods, but to require her to eat with the family. (Within reason, of course. We did not expect our fourteen-month-old to eat steak or chicken.) He assured me that Michelle, like other toddlers, would eat if she were hungry enough and not to worry if she missed a few meals. Then he arranged a follow-up appointment with a nutrition specialist.
I followed the doctor’s instructions, except I continued to feed Michelle a big bowl of baby cereal every morning and another before bed (sometimes as late as eleven o’clock). Many days that cereal was all she ate because she wouldn’t eat anything but baby cereal and peanut butter and jelly sandwiches.
When Floyd and I took Michelle for her follow-up appointment, the nutritionist was angry that our petite little toddler lost weight. He threatened to turn us over to the authorities for child neglect if she didn’t gain weight by her next appointment.
Michelle really liked chocolate milkshakes, so for the next week she was a happy little girl as we fed her one chocolate milkshake after another. It did little for her nutritionally. With a high calcium level due to William’s syndrome, she didn’t need more calcium, and it certainly didn’t teach or encourage her to eat a variety of foods, but she did put on weight, making this know-it-all doctor happy. He didn’t ask how we helped her gain the weight, and we didn’t tell him. Regardless, he wrote in her military medical records (as if he knew what he was talking about), “Parents obviously need counseling in pediatric nutrition.” I think it should have read, “Doctors obviously need educated on listening to parents.”
Most of the pediatricians we dealt with exhibited an air of absolute knowledge and authority on children based on their medical textbooks and schooling. They thought they knew everything. Their pride in their medical degrees and exhaustive studies prohibited them from listening to me as a parent. I never went to medical school, but I knew my child. They simply saw her as a textbook scenario and stamped her with the automatic diagnosis learned in medical school.
At the time, I knew something wasn’t quite right, and I trusted the healthcare staff to identify any or all possible medical problems, but they didn’t care enough to look past what their eyes could see.
The War on Ear Infections
From infancy, Michelle battled chronic ear infections. She refused to take Amoxicillin, Penicillin designed especially for children, because she didn’t like the taste. So her pediatrician prescribed Ceclor, a red, rich, sweet-tasting medicine. She loved it, which made it easy to give to her.
As she grew, ear infections plagued her more frequently. In Greece, Michelle practically lived on Ceclor. One month, I took her to the doctor for her ear, and he prescribed Ceclor. We returned every ten days for follow-ups, and every time the doctor renewed the prescription because the infection wasn’t cleared up. I finally asked him about PE (pressure equalization) tubes. The doctor explained that Michelle would outgrow these chronic ear infections and tubes would be an inconvenience. He talked me out of it.
Between twelve and fourteen months, when most babies start walking, Michelle wouldn’t even stand. Because she crawled and sat up shortly before her first birthday, it didn’t surprise me she wasn’t ready to walk, but it concerned me that she screamed in terror if I stood her up at the sofa or coffee table, even with my arm around her for support. I mentioned this to her pediatrician, who stated indifferently, “Babies walk at their own rate.”
I knew that, but I couldn’t believe the doctor showed no concern for her abnormal fear or delayed development. Up until this point, the military doctors I dealt with brushed off my concerns as not worth noting, while blaming me for her failure to thrive.
Since I had virtually no medical assistance her first two years, my senses sharpened dramatically, and God brought to my attention details I might otherwise have missed. I discovered a definite correlation between Michelle’s ear infections and her balance. As soon as she started becoming fearful of standing, I took her to the doctor for an ear infection. Because she had no fever, was not tugging on her ear, crying, or irritable, the doctor couldn’t believe I suspected an ear infection. Yet, upon his examination, he found the start of an infection.
This scenario repeated itself on many occasions. After several such visits, the doctor asked me how I always managed to catch her ear infections so early. When I explained my observation, he commented sarcastically, “Boy, I thought I’d heard them all, but that’s a new one.”
I responded, “Have I ever brought her in on a false alarm?”
He had to admit, I hadn’t.
In April 1986, when Michelle was eighteen-months-old, Floyd and I went to Israel for two weeks. Some good friends stayed with the children. When we returned home, our little one wouldn’t even sit up. Though she showed no other symptoms, I immediately took her to the doctor. Sure enough, she had an ear infection.
At this time, Michelle still wasn’t walking unaided, but by holding on to the wall or furniture, she cruised all over the house. Well-meaning friends often said, “Marj, it must be nice she’s not walking yet. Think of all the things she could get into if she were walking.”
Strange anyone would say that. I have never met a mother who felt relieved her baby didn’t walk. Besides, if Michelle could pull herself up to it, she could get into it.