FEATURED FAMILIES

From the Heart of the "Other Mother"

Greetings from Texas! I am Becky Sanford, former foster mother to Dalma. Those of you who attended the July 2002 MSUD Symposium in Michigan might remember that I put a picture of a little girl named Dalma on the overhead and said that I was looking for loving, Christian parents to adopt this beautiful little girl with MSUD. I explained that Dalma could really benefit from doctors who are innovative and up-to-date on MSUD. This is the beginning of the story of our life with precious Dalma until she became the daughter of Amos and Edna Newswanger from Pennsylvania. [See next article for Amos and Edna’s story.]

My cell phone rang in May 1999, almost exactly four years ago from the day that I am writing this. Child Protective Services of Texas (CPS) asked if we would take a little girl as a foster child. CPS explained that the baby was a few weeks from being one year old but wasn't able to sit up yet. They thought she was a "failure to thrive" child. Her name was Dalma.

The timing wasn't good. My mother was dying of cancer, and I was spending almost 20 hours with her each day. I talked to my husband and oldest daughter because they would have to care for her since I was so involved with Mom. We agreed that it was "do-able," so I went to the CPS office to pick her up.

I expected to see a frail, thin, sickly little girl, but Dalma was average size for her age (almost a year old). She had a very bad skin rash and couldn't roll over, sit up, or hold her head up. She couldn't lift her arms or legs, didn't make eye contact at all, and made only moaning sounds. She just broke my heart.

The caseworker said that Dalma’s grandmother told them to tell me to feed her only baby food vegetables and fruits and watered down milk, or she would "be sick." (Now I realize how attentive her birth family was to her because they created a personal diet to help her. Amazing!)

I took her home and proceeded to give her formula which made her "be sick"—just like the grandma had said. The next day I called my pediatrician because, after caring for several "failure to thrive" children, I knew that we were dealing with something more than "failure to thrive" here! He informed me that he was going out of town, so I asked him to make an emergency appointment for her at Cook Children's Hospital in Fort Worth (two hours away) with a neurologist. He did!

On day three, we met with Dr. Ryals, and he agreed that something was definitely wrong with Dalma. He called me on day five and said he had learned from her blood work that she had maple syrup urine disease. He had never seen a case but found a metabolic doctor in Dallas who had treated a case.

The metabolic doctor called and informed me to eliminate all protein from her diet until we could see him first thing the next day. On that visit the doctor gave me Ketonex I and a Ross manual on MSUD. I was told to come back in one month for more blood work. I had never heard of MSUD and felt completely overwhelmed! (Each of you knows that feeling!)

The following day while I was with my mother, she regained consciousness and asked about the children, so I told her about Dalma. She was so pleased that we had taken her because she knew that we had refused three other children that month so that I could spend time with her. She went to be with the Lord exactly one week after Dalma arrived.

The timing for Dalma's arrival had to have been from God. She flourished on her new formula. Slowly her skin began to clear up, and within a month she could hold her head up. She still had a floppy baby body, but she was starting to smile and make happy sounds. She even started physical therapy and speech therapy (much to her dismay).

Dalma's physical age was still "in the womb" due to the fact that she had no muscle control whatsoever. She did not like doing therapy at all, but we were soon seeing progress. At a year old, Dalma learned to tolerate being on her stomach and to wiggle her arms and legs. Slowly she learned to grasp our fingers. We cheered at every new level of achievement. Soon she learned to make baby sounds. Dalma now smiled when she was happy and learned to roll from her stomach to her back.

By eighteen months, she had progressed to the "army crawl" with her arms dragging her legs. At two years old, she could finally sit alone. We heard her first words of Nana (for me), Nat-a-le (for Natalie) and nite-nite. To be honest, they all sounded alike, but Natalie, our four year old, knew what she meant and interpreted for the rest of us. At two years, Dalma could crawl, wave bye-bye, give sloppy kisses and was the light of our lives.

Dalma turned three in June of 2001, and in August she started Early Childhood Intervention at our local elementary school. She went to school in the mornings from eight to twelve. By this time Dalma had a walker to help her cruise the halls and had charmed all of her teachers with her vivacious personality and happy smile. Her nickname was Nosey Rosy. While her physical condition had improved dramatically, her mental capacity hadn't made as much progress. For the first time in her life, she learned new tricks—like how to throw a fit, bite, and destroy the teachers' desktops at school! Up until now, she had been in toddler mode, but now she was able to walk and reach anything and everything.

As most of you know, attending school creates a whole new problem of lunches and snacks! For a few months I just tried to pick her vegetables and fruits from the school lunch menu but soon realized it was much easier (for better control) to pack her lunch every day. Dalma had a huge problem with chewing. She refused to do it, so we just mashed all of her food so she could swallow it.

I attended the MSUD Symposium in Michigan in July of 2002. At this conference, I realized that maybe if Dalma's diet was changed and her levels were monitored more closely, she might improve even more. Dalma was not on any supplements to help with her levels. When I told the people at my table and a couple of the Symposium speakers what her levels were, they were concerned. I learned that there was a lot of new information that my doctor in Texas would not use. His line was that she was so much better than when we first got her. But my question was, "How much better could she be with more aggressive medical care?"

At the Symposium, when I made a plea for an adoptive family for Dalma, three families expressed their interest and asked for additional information. This is where Amos and Edna Newswanger entered the picture. They were very interested in adopting Dalma! We were so excited. We visited by phone several times after the Symposium.

Then in October of 2002, Dalma, Natalie (my six year old daughter) and I packed up our Suburban and headed toward Amos and Edna’s to stay a few days with them. We also wanted to meet Dr. Morton and visit the Clinic. It was a long, beautiful drive, and the girls did great! It was about 1500 miles and took us about 23 hours. We never got lost until we were within a few blocks of Amos' house!

Amos and Edna welcomed us with open arms. We visited Amos' woodworking shop and Edna's fabric store, and we rode in their horse-drawn buggy. We stayed in their home and enjoyed fellowship with their church members and other foster parents and visited with their son Neil and their daughters. We enjoyed meeting Dr. Morton and visiting again with Dr. Kevin Strauss. It was such a wonderful trip.

We brought Dalma back home with us, and by that time all the paperwork for an interstate adoption had begun. In December 2002, our caseworker, Mr. Bill, flew Dalma to Pennsylvania. (I wish I could have been a fly on the wall!) Dalma remembered Amos and Edna, and the rest is history in the making. I am so grateful for Amos, Edna, and their loving family. God is good!!

—Becky Sanford

Dalma’s New Home

See from the From the Heart of the “Other Mother” (previous article) for background information on Dalma.

On December 11, 2002 we became foster parents to a four year old girl with MSUD named Dalma. She came to our home all the way from Texas. We also have three married daughters and a son Neil, 21, with MSUD. [More on Neil in editor’s note at end of article.]

It was only through God’s leading hand that we found out about Dalma. When we signed up for foster care in October 2001, we applied for special needs children. We realized that all children who come into the agency have special needs, but we were willing to take the ones with extra special needs—the ones most people don’t take as foster children. We were approved in February 2002, and five days after approval we were given two girls ages three and four. They were a challenge. The one is still with us, and the other left after staying six months.

In July my husband Amos, our son Neil, and I attended the MSUD Symposium 2002 in Michigan. We heard Becky Sanford, a foster mother from Texas, tell about Dalma and ask if someone who is familiar with MSUD would give Dalma a home. Amos and I looked at each other and knew right away we would give Becky our name. What really touched me and caused me to choke up was the poem Becky had on the screen:

What Matters One hundred years from now it will not matter what kind of car I drove or what kind of clothes I wore. All that will matter is that I made a difference in the life of a child.                             —Author unknown

Dalma in her new home with the Newswangers

When we talked to Becky, we were amazed at how much Dalma seemed to be like our son Neil. Her delays were so similar. Our hearts went out to Dalma with her needs, but we didn’t want to get our hopes too high. We knew others might ask for her also.

We didn’t hear from Texas for a couple months. One day Amos called Becky. She said our name was given to the adoption agency. We waited again. Then Becky called and said she would like to bring Dalma here for a visit.

Becky, with her seven year old daughter and Dalma, arrived for a visit in October. She drove all the way from Texas with the two girls. Dalma was 4 years old and made herself right at home. She had no problem adjusting to Neil or to the other foster children (a girl four and a boy six and one half months old). It was an interesting and busy week. Some of the other mothers with MSUD children in the area came to meet Becky and Dalma. Foster parents from this area also stopped in one day. We even managed to visit the Clinic For Special Children in Strasburg so that Dr. Morton could meet Dalma. [He is Neil’s doctor.]

After Dalma’s visit we wondered how long it would take for all the paper work to be done. The agency in Texas was trying to place her here for Christmas. We waited patiently but were eager to get her settled in before winter.

I remember telling my husband one day, “I really wonder if it will happen. Maybe we should call again.” He said he had decided if it was the Lord’s will for her to come, she would come. That same day we got a call from Texas saying everything was going through as planned.

Then on December 3, we got a call from a caseworker named Bill. He planned to fly with Dalma on December 11, leaving in the morning and arriving around 6:30 in the evening. He would stay in Pennsylvania for several days visiting family after leaving Dalma with us.

When the big day finally arrived, everything was covered with ice, and our local airport was closed. Bill called as they were getting started on their journey. He was surprised to hear we were having a winter ice storm. We hoped the weather would be better later in the day, but it didn’t change much. Bill called again and asked if we had a jacket for Dalma because she only had a light-weight one for Texas weather. He said he would stay in Pittsburgh for the night if necessary. We kept calling our local airport, but there were no flights leaving or arriving. Then another call came just when it was time for us to leave for the airport. Amazingly, the only plane arriving that day was the one with Bill and Dalma! Although a little late, they arrived safely. God’s protecting hand was over them and our prayers for a miracle were answered.

Amos met Bill and Dalma up at the airport. I stayed home with the children because of the icy weather. Dalma went right to Amos for a hug and was all smiles. When she walked into our kitchen, she made herself right at home and checked everything out. She had no problem settling into bed that night.

Edna Newswanger—photo taken at Symposium 2002

The next day Bill stopped in for a visit before leaving. When he prepared to leave, Dalma backed away as though she was afraid he might take her away again. Dalma adjusted very well to our family, and Neil was excited too. We could tell he thought it was great that she drank a special formula like he did. He wasn’t impressed, however, when she wanted all of his attention after he came home each day from the adult training facility he attends. Dalma would go around in circles in front of Neil and laugh or hang on to the pockets on his pants. Sometimes she would sit on the floor right in front of him and make noises. He wouldn’t pay much attention to her until it got to be too much; then he would say, “Dalma!” quite loudly to let us know she was pestering him. After a month of this, Dalma decided she wasn’t getting the attention she wanted and quit.

Dalma greatly improved as days went by. We had to find the level of leucine she tolerated. We started at 300 to 400 mg and continued increasing it up to 800 mg per day. Then gradually we had to back down to 650 mg of leucine. At first we were sending blood samples to the Clinic every week but later changed to every other week.

Dalma had an ear infection and ran a high fever soon after she came to us, but she took her formula and kept eating. We had no serious problems through those illnesses. Our other four year old had scarlet fever, but thankfully, Dalma didn’t get it.

A month after she arrived, Dalma started going in the mornings to a preschool for children with developmental delays. She turned five on June 19, 2003. We think she has shown improvement in a number of ways. Her speech is limited, but she has a few words others can understand. She called me mamma right away, and Amos is da-da. She didn’t act as if the great amount of cold and snow we had this winter was anything new. She plays nicely with toys for short periods of time. Our other four-year-old leads her around everywhere, and Dalma goes right with her—most of the time. She is usually a smiling, happy girl.

We are thankful to Becky for attending the Symposium and pleading for someone to give Dalma a home. Becky was brave and trusted someone was there for Dalma. We feel very fortunate to have this very precious, special girl to care for. We can only do this with the help of our heavenly Father. We never dreamed we would get a child with MSUD when we signed up for foster care. Although foster care was all we were going to do, we plan to adopt Dalma in the near future. The Lord moves in mysterious ways. We need to take only one day at a time.

—Edna Newswanger

Amos and Edna Newswanger, a Mennonite family who live in Martinsburg, Pennsylvania, have a wealth of love for special needs children. Their only son, Neil Ray, was born July 28, 1980. His case was unusual in that he survived a very late diagnosis months even though he has the Mennonite classic mutation of MSUD with zero enzyme activity. Neil had the early classic symptoms of MSUD and was hospitalized off and on until diagnosed at 6½ months of age when he was in critical condition. Undiagnosed children with this mutation usually die within the first weeks of life.

Neil was hospitalized a number of times during his childhood and suffered extensive brain damage. Since then he has grown to be a strong and physically healthy young man. He communicates mostly with grunts and words understood only by those close to him. His highest level of development is in his gross motor area. He can walk and enjoys being outdoors and swinging on an outdoor swing. He is particularly fond of pens and toothbrushes. He has a collection of over 500 toothbrushes. He remains on seizure medications and works in an adult training facility. He now has a sister with whom to share MSUD experiences.

A Miracle Child

This article was adapted from an article Angie Perdue wrote about her daughter Tangi in an effort to alert the public to the need for newborn screening for MSUD. She is involved in a personal campaign to get Texas, her home state, to screen for MSUD. This is the sad story of Tangi’s delayed diagnosis. I was seventeen when I became pregnant with my first child. There were no complications with my pregnancy. I gave birth to a baby girl on August 7, 1996 at the age of eighteen. Her father and I decided to name her Tangi after a girl on Buck Rodgers. Neither of us knew it then, but our world was about to change. The minute Tangi was born she began crying nonstop. That did not alarm me, but then she kept crying and arching her little back. I knew the sound of a baby̓s cry, but this was different. It was more like a scream than a cry. Being a new mom, I was scared— scared to hold her. Deep down inside I could sense that something was wrong. She looked normal; she just did not act normal.

When my husband and I brought Tangi home from the hospital, we stayed with my mom so that she could help me care for Tangi and teach me a little about how to be a mom. After all, she raised seven children. She was an expert in my eyes. That first night at Mom’s was a nightmare. Tangi cried nonstop. She would not suck her bottle, would not sleep, did not urinate, and she was still arching her back.

I was raised in an Assembly of God Church, and God was no stranger to me. I knew that God was telling me something was wrong with this baby. We took Tangi to the emergency room two or three different times those first couple days as well as to the pediatrician. Our baby was getting worse. We took her to the emergency room again when she was three days old. This time they did some tests and a nurse saw Tangi having a seizure. From the test results, the doctor thought she was having some brain problems. They decided to send Tangi to a hospital in Galveston for more tests.

I was very scared. I remember sitting in the hospital room at my daughter’s bedside looking out the window up into the heavens and asking God why? What have I done to deserve this? It was not supposed to turn out like this. Why my daughter? My mom came and sat beside me crying. I just looked at her and said, “Why? What did I do?” She said, “Angie, God is in control of this situation. Who knows why God does things or allows things to happen. God has a purpose for everything, even though you don̓t understand or may never understand. Remember God is in control.” When the nurses brought Tangi back to the room, I held her and said, God this is your child, not mine. I knew my job was to raise this child for God.

In Galveston, Tangi was put in the neonatal intensive care unit. We waited for hours not knowing what to expect. When we saw her again, it was a scary sight. She was hooked up to so many wires. Test results showed Tangi̓s brain was swelling. Why? The doctors did not know.

Tangi eventually went into a coma. My aunt called and told me that God had given her a message for me. God said that this child is not of death. I cannot put into words the joy that I felt. It was like someone was right there in the room with me. In my spirit I could feel Jesus giving me this huge hug. I needed that; it kept me going. Deep down I felt God was telling me that everything was going to be okay.

The circumstances did not look good. The doctors said that if our daughter came out of the coma, more than likely, she would not be able to see, hear, speak or even walk. But I remembered what God had said, “This child is not of death.” I held onto God̓s word and thanked Him every day for that.

Then at one month of age a test result showed Tangi had a rare metabolic disease known as maple syrup urine disease. I had never heard of it before. The doctors put her on a special formula. After a week, she came out of the coma. Thank you Jesus! Now was the time for her father and I to learn about this disease and how to care for her. It took us a month to learn how to make her formula and learn what foods she could eat.

It was very scary to bring our little girl home when she was three months old. We lived two hours away from my mom and any of our family. I knew God was looking over our little girl and was right there helping us, because He did not take her home to be with him when she was so sick.

At first I prayed every day for my daughter’s sight, speech, hearing and ability to talk, but then I started thanking him for those abilities. We had noticed Tangi staring at the light and her eyes would flutter when I shut a cabinet door. God gave me dreams of Tangi as a normal little girl. I held on to my dreams.

Tangi’s care was transferred to Baylor University Medical Center in Houston. She was doing okay until she became sick when she was six months old. She was admitted to the hospital, but I soon sensed she was getting worse. She had a rash under her neck and on her bottom. It was no normal baby rash. It looked awful and so painful. No one knew what caused the rash.

My mother-in-law called and told us of a doctor in Lancaster, Pennsylvania who specialized in treating MSUD. After speaking with Dr. Holmes Morton on the phone, and praying about the situation, I knew I had to get Tangi to this doctor. The question now was how? We had no money. I had never flown or even been out of the state of Texas before. I prayed and put the situation in God̓s hands. Two days later our friend’s father gave us the money to fly to Pennsylvania to see Dr. Morton. Now I had to convince the doctors, as well as my husband, to let me go. They did not approve. My husband thought she was okay where she was and did not feel comfortable with me and a sick baby traveling alone. I could understand that. However, I also knew that God wanted me to go; so that̓s what I did.

Tangi and I flew into Pittsburgh, Pennsylvania. My mother-in-law and sister-in-law picked us up and drove us to Lancaster to meet with Dr. Morton. Dr. Morton admitted Tangi into the Lancaster General Hospital. We stayed there for a month. He checked all of her amino acid levels and straightened them out. Tangi was like a new baby—no rashes or anything. She looked great. Dr. Morton and his staff took excellent care of Tangi and I both. I had never been to a doctor who loves his patients and cares for them as much as Dr. Morton. He truly loves and cares for these children with rare diseases. He stayed at the hospital with Tangi all day and through the night. That is dedication, and I thank God every day for putting Dr. Morton in our lives.

Tangi is almost seven years old. She can see, hear, speak and walk. Thank you Jesus! She plays outside on the swing set with her younger sister and enjoys life. Tangi does have learning disabilities. She is hyperactive and cannot stay focused for a long period of time. She recently learned how to count to ten. She is behind in some areas, but does some things better than we expected. We are very proud of the progress she is making.

We see Dr. Morton at the Clinic for Special Children twice a year for check-ups. Tangi has a Mickey Tube [another name for a G-tube or gastrostomy tube] in her belly for the formula. She refused to drink her formula anymore, so Dr. Morton thought it would be best to use a Mickey Tube because Tangi is his patient, and we live so far away in Texas. Since she is under Dr. Morton’s care, we have not had any serious problems.

God told me He was going to heal Tangi of MSUD. I don’t know how or when, but I know that He has a plan, and He will heal her. I ask that when you pray, you help me thank God for what He has done in my daughter’s life, and what He is going to do in the future.

Tangi’s bad experience could have been prevented if she had been diagnosed at birth. Some states screen for MSUD, however, Texas is not one of those states. It needs to be. More doctors need to learn about MSUD. It is surprising how many doctors have never heard of this disease. It is rare, but people need to be aware of it.

—Angie Perdue

Section 1 |  Section 2 | Section 3 | Section 4 | Section 5