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The Story of MUMS

The Story of MUMS
National Parent-to-Parent Network

By Julie Gordon

I always dreamed about the day I would have a baby and in 1973, I was excited to find out I was really pregnant. It was even more exciting to share the pregnancy with two friends who attended La Maze classes with us. We were all due around the same time.

As all of you, I assumed all would go well. I delivered first. I told the nurse that I thought my water had broken , but she told me I was wrong because there was too much blood. It was 1:00 a.m. and they only checked on me once an hour thinking first time mothers take longer. When I was dialated to 10cm and the contractions were close together, they told me not to push because the doctor wasn't there yet. After the doctor arrived the delivery was normal, only there was silence in the delivery room when Jessica was born. I watched as the doctor gave her mouth-to-mouth resuscitation through a bloody mask, she was pale and limp and quiet. Because of an unnoticed slit in the umbilical cord she was born dead from loss of blood. The neonatologist said he had never seen such a white umbilical cord - so devoid of blood. She was whisked away through an underground tunnel to the Neonatal Intensive Care Unit in the next door hospital. She and I both needed ice cold blood transfusions to save our lives. Too much of an emergency to warm up the blood. When I looked at the needle in my arm a large dark bubble was forming and I had to alert the nurse that the needle was not in a vein. All I could think of was my baby getting this chilling fluid pumped into her too. The next day we were told "Significant injury to the brain from lack of oxygen and that she had uncontrollable seizures. " If she lives, she'll be a vegetable." Was it selfish to want her to live? How could I want my baby to die? The denial..."She'll be all right." Friends calling..."What did you have?" "A girl, but...." The cards, the presents...the pretended joy. The waiting. The fear when the phone rang or the doctor approached. Happy parents with healthy babies all around. On two occasions two different nurses mistakenly brought other mother's babies to me asking if I wanted to nurse. That was so painful.

The next day I was wheeled through the tunnel to see my baby. Before I got to see, her a nun ran up to me and asked if they could baptize her because "they didn't think she would make it". Then I saw her looking lifeless in the little incubator. The horror of all the tubes...the helplessness. Will I ever hold her before she dies? I wanted to express my milk for the doctors to give to her. When I asked the nurses to show me how to express my milk for her I could tell they thought it was a waste of time. One wonderful nurse did help me, but when I brought my milk to her the doctors said they only give mother's milk to preemies, so I ended up donating over a gallon to help the other babies. After four days I had to leave the hospital with no baby. On day seven I was told Jessie was not tolerating the formula and I begged them to give her my milk. They appeased me and she turned around in one day! Finally the seizures stopped and Jessica turned around, I could hold her and nurse her. We took her home two days later. She was going to make it! We took her home, to no therapy, and no help. "Wait and see how she turns out. We can't fix her."

My friends babies were born. All was well. They felt guilty. Our tragedy stole some of their joy too.

At six months, Jessica was not developing like my friend's babies. They were starting to crawl, Jessica was stiff and screamed for hours every day. I asked her pediatrician for a referral to a new Infant Stimulation Program at the Cerebral Palsy Center. He was unfamiliar with it and said "No". At 8 months, I insisted and he agreed to let me try it. (I was becoming assertive).

Help at last! Therapies to work on, feeding and carrying techniques to try and most of all, I met other mothers with children like Jessica and some were even worse. I was not alone! I felt such comfort talking to them. Comfort no one else was able to give me. Maybe, they felt the same way. The therapist at the CP Program wanted me to start a support group. I wasn't ready.

When Jessica was 3 years old, I became pregnant again. This baby would make it all up to us. We would experience a "normal" baby. Labor started, we went to the hospital. "No heartbeat, go home your labor stopped, the baby is dead. It probably has birth defects." Three endless days later, I delivered a fullterm son. He was dead. Many birth defects -"possible Trisomy 13-15. It just happens." I got to hold him, it was comforting. The empty crib and new baby clothes waited for us at home, as well as the phone calls to deal with from friends and relatives.

Would we ever have a "normal" baby? That was the worst part. We went to Madison for genetic counseling and were given the okay to try again. "It was just a fluke. One in a million." (Years later I found out the drug Bendectin I took for morning sickness caused the type of defects our baby had. It was removed from the market in 1983 thanks to the efforts of another mother, Betty Mekdeci from Florida.)

Six months later I was pregnant again. After 7 months and an ultrasound test, twins were diagnosed! My fear overtook my joy. Twins are high risk. I was already high risk. How could I handle three even if the twins were all right? At this point Jessica was 4 years old, diagnosed with severe Cerebral Palsy, would never walk or talk, but had a cute sense of humor and charming personality. She was very demanding and so bonded to me she cried whenever we were apart. I had no sitters that could handle her. I had to carry her around because all I had was an infant seat she had outgrown and a highchair she couldn't sit up in.

The twins were born by C-Section only 2 weeks early. They were beautiful, healthy girls! We were overwhelmed with joy! We named them Katie and Abigale. It was like having triplets when I got home, with all the care Jessica needed. Jessica was not happy with the competition for her mom's before undivided attention. I couldn't carry her around all the time. She had to lay on the floor. To the amazement of all the therapists, she began to crawl! She grew to love her sisters and unselfishly delighted in their progress.

When Jessica was 8 years old, her father and I divorced. It was not because of her, but I do believe that a child with special needs or any difficulty can test the love a couple has for each other. The strong relationships get stronger and the weak ones fail. Many times mothers take on the whole burden of care in an attempt to make life as normal as possible for the rest of the family. This only builds barriers in a relationship.

When the twins were 2 years old, I decided I was ready to start a support group. The therapist, who originally wanted me to start a group gave me the names of 3 mothers with children with Cerebral Palsy who I invited over to my house. We had so much in common, we were not lost for words. We decided to meet on a regular basis and word spread of our little group. We originally thought it would be for mothers whose children had Cerebral Palsy, but when we met other mothers with children with other problems and no place to go, we opened it up to anyone. We had more in common than differences. We all had lost the perfect babies we had dreamed of having. We all had felt so alone, depressed, frustrated with lack of help. We shared the names of good doctors, equipment, services and most of all the instant bond that only mothers of children that aren't "perfect" can have, and the understanding friendship that we can only get from each other.

We discovered we had power too. When a mother called us because she wanted to stay in her child's room at the hospital and was refused, we met with the administration as representatives of a group called MUMS and had the policy changed. We advocated for each other with the schools and wrote letters to legislators. We grew in strength and number. New mothers knew nothing about the services we did, so a newsletter was developed to get information out to those who couldn't attend meetings.

When Jessica got a computer, I was able to put all the names of the parents in our group that I had put on index cards into a data base and was ablr to quickly match parents whose children had the same condition. Now MUMS receives referrals from all the state's major hospital as well as national organizations such as; Alliance of Genetic Support Groups, National Organization for Rare Disorders, March of Dimes, National Information Center for Children & Youth with Handicaps in Washington DC. as well as Parent-to-Parent groups in Georgia, Virginia, Oklahoma, New Mexico, Idaho, Florida, S.K.I.P. of New York, etc.

I never dreamed MUMS would become this large, but it is so rewarding to help parents find matches for those rare disorders that even their doctors or geneticist never saw before. Support groups for these disorders are forming all over the country from matching these parents. MUMS members now numder 23,000 and span over 54 countries.

None of this would have been possible if it hadn't been for the birth of my daughter, Jessica. She made me aware of what is important in life. She set my priorities straight and made me realize that true joy in life is found by helping others. We can never overcome our own sadness until we can reach out and help someone else who is in need.

It was difficult to accept that Jessica was cognitively impaired. She has developed behavioral problems and I discovered she has autistic characteristics. The behavior problems are the hardest to deal with and my heart especially goes out to the parents of these children. We tend to blame ourselves more and get more criticism from others and less help when the disability is behaviorally related.

I am so grateful for all Jessica has taught me and all the wonderful people: care providers, teachers, therapists, and parents I have met because of and through her. I admire her patience using a headstick to type and spell out messages that I take so long to figure out. How can I be sad when she has joy with all her limitations? She operates a power chair which has given her more independence and a better feeling of self worth. She also has a speaking computer so she can speak out loud.

I don't believe God damages babies. I feel these are accidents of nature or caused by our environment, but perhaps in some cases He allows our children to live because they contribute so much to us and this world that needs it's priorities changed. I feel in the next life they will be compensated for what they have missed out on in this life. My faith in God has increased because I know He has given me strength when I needed it. I was comforted when Jessica told me she walks and talks in her dreams and I tell her she will do these things in Heaven. We parents will have extra joy also when we experience our children without disabilities in the next life.

When I talk to other parents, I feel so helpless that I can't take their pain away, but if I can help make life a little easier for them, it makes Jessica's life more worthwhile and it gives me a direction in my life.

Jessica always had difficulty with swallowing and aspirated on occasions. She got worse as she got older and at 20 years old she had a nissen fundoplication surgery to stop reflux and a G-tube placed to feed her directly into the stomach. For two years the adult day program she is in would not feed her through her tube and the sitters I hire to care for her have to be more trained. I don't know what the future holds for Jessie, but I do know that services are not there for her. The trend is to close institutions and serve children in the community, but the rules and funding still are discriminatory. Many children are surviving with more and more severe disabilities and society must commit to life to death quality care. Jessie and I will continue to fight for services for all special children out there struggling and those yet to be born.

Through networking with parents in other countries, we discovered there are over 500 English children with brain damage using a new therapy called Hyperbaric Oxygen Therapy (HBO). I flew Jessica to Canada twice and Alabama once and she has had over 200 HBO treatments. She is a totally different person! To learn more: History of MUMS and Hyperbaric Oxygen Therapy Read her story at: Jessica & Hyperbaric Oxygen Therapy