Aaron and Minerva Zimmerman are an Old Order Mennonite couple from Mifflinburg, Pennsylvania - northwest of the Lancaster area group of Mennonites. I talked to Minerva in PA this summer, and she said she was considering writing. I encouraged her to write for this issue. We were home only a day or two until this arrived. Thank you, Minerva, for your prompt response. This was the only history submitted for this issue.

On a warm, Sunday, summer morning, July 14, 1991 at 5:40 a.m. we were blessed with our second daughter, third child, Rhoda Elizabeth. She weighed 7 lbs. 6 oz. and was 20, in. long. She had long dark hair - quite a bit more than our other children. We didn't realize something could be wrong, as she seemed like other newborns to us.

At 3 days of age, I noticed a different smell when I changed her diaper. I held the diaper to my nose, but I didn't recognize the smell. So I reassured myself it must be her bowels.

The next day at 4 days of age, I didn't really think of that smell. But every time I tried to nurse her, she pulled back and really cried till she'd finally settle down and nurse. I thought our baby must be born with a stubborn streak!

The fifth day was very hot, and I thought Rhoda minded the heat, as she was kind of listless, didn't open her eyes, and hardly cried. She was a very contented baby. That night it changed. She cried, and her mouth was pinched shut when I tried to nurse her. I pried her mouth open with my fingers. She'd suck three times and go back to sleep.

This happened off and on all night. By Saturday morning, the 6th day, I was ready to give up! I called our midwife Mary Hostetler and told her how our baby acts. She asked a few questions concerning her navel. All seemed fine there, so she told us to take her to our family doctor. By that time she couldn't cry anymore, just moan.

The doctor examined her, and said he thinks she might have a blood infection or pneumonia and sent us to our local hospital around ten miles from our place. It was noon by then, and they started an IV. Tests that afternoon showed nothing.

We went home for the night. Sunday morning, when we came to her room, a pediatrician, Doctor Stoltzfus, met us. He questioned us about MSUD. Was it in our families? I had a cousin, Amos Fox (Weaver and Alma's son) who had MSUD. But on Aaron's side, we didn't know of any.

Doctor Stoltzfus said he knows very little about MSUD, and neither did we. He was going to test for it. It was Sunday, so the blood wouldn't be sent till Monday. It would take a couple of days to get the results. So all there was to do was wait and wait.

By this time Rhoda didn't respond anymore and was very stiff. Sunday afternoon my Aunt (a sister to Alma Fox) and Uncle from the Lancaster area came to visit us at the hospital. When she saw Rhoda, she said she acts just like Weaver and Alma Fox's MSUD babies did. They said something to the nurses, and the nurses said everything is taken care of.

That evening back home, Aunt Eva just didn't feel comfortable. She knew something should be done. She called her neighbors, Enos and Anna Mae Hoover, who also have children with MSUD, and told them about our sick baby. Enos called Dr. Morton. By 8:30 p.m. Dr. Morton (someone new to us) called to ask permission to see Rhoda at the hospital. He planned to meet Doctor Stoltzfus at 1:00 a.m. in her room.

We were in a daze; it was like a nightmare. Surely we'd wake up and find it all a dream. But no - at 1:30 a.m. the phone rang. "Please come to the hospital right away. Doctor Morton is 98% sure she has MSUD and wants to move her to Lancaster General Hospital."

Luckily, the children were at Aaron's sister's for the night. But we needed to find someone to do our milking and a driver to take us to the hospital at that time of the night.

At 2:30 a.m. we met Doctor Morton for the first time. They put a tube through Rhoda's nose to give her formula. By 3:00 a.m. we were on our way to Lancaster, all in Doctor Morton's car. We stopped 3 times to give her some formula. At 5:30 we were at this new hospital. There we learned much about MSUD. It looked like a huge mountain before us!

Her highest level was 38 mg/dl. She spent 6 days in the Lancaster General. We were glad to bring her home again, but we had so many questions yet. Could I take care of her, etc.?

She was a very fussy baby and had many ear and yeast infections. Then in Dec '92 when 17 months old, she weighed 21 lbs. and was beginning to loose her hair. We had tubes put in her ears, which we thought would solve the problem. It didn't.

Jan.'93 she was admitted to Lancaster General for 5 days with very low levels and very run down. She had lost all her hair. She was put on 90 gm. S14 and 30 cc. leucine for a whole month till her levels finally stayed at 3 and 4 mg/dl.

At 19 months of age she started to walk. By 20 months she had a nice amount of hair again and weighed 25, lbs. In Feb. '95 she was again admitted to Lancaster General for 3 days. She had the flu and couldn't keep anything down. She was very dehydrated and had a leucine level of 21 mg/dl.

Rhoda is now 4 yrs. old and doing well. She is talking about going to school - how she's going to wear her big sister's school dresses and take chocolate milk in her thermos.J

On June 29, 1995 we were blessed with a healthy son whom we named Curvin Jay. Rhoda loves him dearly. May the Lord bless you all.

Minerva wrote a note for "Tips for Mixing Formula" under the DIET & NUTRITION section. I am quoting from it here as it gives some information about her problem with Rhoda.

"Mixing formula is one of the easier jobs, if you don't loose a blender part.J It's after the formula is mixed when it turns into a challenge! Rhoda, age 4, does not beg for her formula, but needs to be reminded again and again to drink her formula.

A new drinking cup does wonders, but it only lasts so long - till the newness is worn off. Rhoda has seven different drinking cups! When she doesn't want to drink it, we'll use another cup she hasn't used for a couple weeks. Wishing you all much patience and strength to face each new day."


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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