This is a dear friend’s story, Linda. She owns the educational toy company, Education at Home. Linda is a retired teacher with a Master’s Degree in Elementary and Special Education. Her husband has a Doctorate in Clinical Psychology and had an extensive private practice treating children as young as two years of age. Here is their journey.
I am almost 72 years old so where do I start?
Let’s start at age 28 after being married for a few years and trying unsuccessfully to conceive a child. Life had its ups and downs until then but never could I have imagined what was to come. In July, 1972 my husband and I adopted the most beautiful baby girl at age 5 weeks.
She had big blue eyes, the tiniest of noses and pink rosebud lips. We were in heaven and named her Tara, the name her birth mother had chosen. Life could not have felt better.
Tara met all of her milestones early. Walked at nine months, talked at ten, and was a pleasure. Then she turned 18 months. First she started to cry that her legs hurt when walking. Took her to the pediatrician and was told nothing was wrong. Then she started having raging temper tantrums, screaming and yelling for no apparent reason. I took her for a check-up. Nothing was wrong. And then one day I got a call from my husband. “Tara is under the kitchen table, eyes rolled back, making strange gestures with her hands and seems unable to talk.” I rushed home and we rushed her to the ER. All sorts of blood tests came back normal and Tara gradually acted “normal” again.
Episodes like the one I described happen more frequently and we took her to a major New York City Hospital for a neurological evaluation. By this time Tara was having full blown seizures every time she had a fever over 103F. After extensive testing the pediatric neurologist informed us that our beautiful baby girl had Temporal Lobe Epilepsy and prescribed phenobarbital to be taken daily. Devastated as we were, we were relieved the diagnosis wasn’t worse than that.
Tara continued to thrive intellectually, socially and physically and the strange “tune out” episodes lessened but the high fever seizures continue relentlessly and Tara gets infections easily.
Then one day at age 3 ½ Tara started screaming while in the bathroom. “Mommy I can’t move my hands or feet.” We rushed her to the ER and were told her calcium level is 5 when it should be 10 and her phosphorus level is dangerously high. But this hospital refused to admit her. It was 1975 and they refused to help us.
We grabbed Tara, who still couldn’t move, and sped all the way to Lenox Hill Hospital in NYC, a 45 minute drive, where my mother-in-law had made arrangements for Tara to be admitted immediately. As soon as we arrived at the ER, Tara is rushed to pediatric ICU and IV’s start popping out all over her body. We are told she is critical and the next 24 hours will tell the story.
Dr. Raphael David, head of Pediatric Endocrinology at New York University Hospital, was immediately called in as a consultant. Tara was infused with calcium and gradually her movement returned and she was looking better. That was the good news. The bad news was Tara would have to remain on IV calcium for the foreseeable future in order to remain alive.
And she would have to endure blood tests twice a day. This was 1975. No ports, pic lines, or any other easier methods to get blood from a three year old child. No electronic IV instrumentation to regulate drips. No beeps to prevent the IV from clogging. Medical science was far removed from today’s modern hospital.
Tara was started on Vitamin D in oral form to replace the Vitamin D she was not absorbing. Diagnosis was Hypoparathyroidism idiopathic in nature. It was thought that by taking the vitamin D all would be well. Not quite. Tara could not absorb the vitamin through her liver and after five weeks of constant IV’s and blood tests Lenox Hill Hospital had run out of resources. Dr. David accepted Tara into his pediatric metabolic unit at NY University Hospital/Bellevue. This unit was reserved for the most complicated cases with the least amount of hope. Visiting hours were 11 AM to 7 PM. No exceptions were made. After being with Tara 24/7 we had to leave her with strangers. Our hearts were broken. Tara screamed every night when we left for 3 ½ months.
The nightmare ended in May of 1975 when Dr. David suggested we allow Tara to try a new form of Vitamin D being tested by Hoffman La Roche Pharmaceuticals for end stage kidney disease. Perhaps she would be able to absorb this form of the vitamin because it bypassed the kidneys and liver. It was a small red pill. No bigger than Tara’s pinky nail and she was able to swallow it. After the first pill Tara’s calcium dropped a little. As more pills were added, Tara was able to be free of that nasty IV and gradually her health improved enough to be sent home with her magic pills. A year later, Tara was asked to join a group of children who had been in the same metabolic unit for a fund raiser. Her picture was taken along with the other children and plastered on the front page of the NY Daily News with the heading, TEN MIRACLE BABIES.
But Tara attended pre-school and kindergarten like all the other children. In 1976 we adopted a second daughter at age 3 days and named her Marissa. Tara was devoted to Marissa and took the role of big sister literally. Our family was settling into a routine and life seemed good.
And then in June of 1977 Tara became increasingly tired. She would sleep more than usual and had little energy. We took her for blood work but all looked normal. And then one day she was on the couch and wouldn’t wake up. My mother rushed over to care for Marissa and off we rushed to NY University Hospital watching our child deteriorate before our eyes. We couldn’t trust a local hospital to take care of her. Dr. David met us at the ER and knew just what she needed. Her sugar level was well below normal. Tara had a second endocrine illness. Addison’s Disease. The only problem was that the treatment for Addison’s Disease is hydrocortisone. Hydrocortisone is the treatment for Hypoparathyroidism. Tara had two incompatible illnesses. Tara had to go back in the hospital for another 5 weeks of constant blood tests and IV’s. But this time she was at NYU and I could sleep on the same floor in a parent’s room. But how would I be with Marissa? I couldn’t go back and forth to our home. My mother took a leave from work and moved into my house. I didn’t see Marissa for five whole weeks and it was the biggest mistake of my life. When Tara was stabilized enough to return home, Marissa was 18 months old and wouldn’t look at me. Tears overwhelmed me and I was paralyzed. I still think the separation continues to affect my relationship with Marissa even now. Or perhaps I cannot forgive myself.
Many good years followed our family now that both diseases were under control. Tara took her pills and lived a normal life. She went to school, day camp, sleep -away camp. She took seven dance classes a week. Life was great. And then when Tara was 14 she developed Juvenile Rheumatoid Arthritis. Now it was 1986 and autoimmune diseases were coming to the forefront. Perhaps Tara had a combination of autoimmune diseases we thought. She was in agonizing pain, given aspirin therapy, lost her hearing temporarily and missed half the school term. But she beat the disease and while diving and seven dance classes a week were put on hold, Tara returned to school and graduated with good grades.
College followed and all was well. Marissa started high school and I went back to full time teaching. We continued on this way for eight wonderful years. Marissa graduated and entered college, I was teaching and my husband was practicing his profession, Clinical Psychology.
In 1998, when Tara was 26 years old, she was suddenly unable to absorb food. She had constant diarrhea, lost a lot of weight, blood values were all turned around and again Tara is in and out of hospitals with no end in sight. The doctors decide to send her home with the IV poles in the house and Tara got hydration 24/7 to keep up with the diarrhea but she was losing the battle. Nothing helped BUT now we have the internet. I went on line and found Noel Maclaren, MD in California doing research on a new syndrome called Autoimmune Polyglandular Syndrome Type 1 or better known as APS Type 1. Many of the symptoms described mimicked Tara’s symptoms. Could this be Tara’s problem? It is a genetic disease not idiopathic. We have no information about Tara’s birth family. One phone call later led to blood shipped to Dr. Maclaren and after a very long two months the DNA analysis is back. Tara has one of the rarest genetic diseases in the world with only a handful of people presently diagnosed. It is so newly discovered and has some dire consequences. Tara has actually been one of the luckier patients.
Gradually the malabsorption ends and Tara’s and our lives resume. Until 1993 when once again Tara feels weak and lacks energy. New endocrine issue arose- This time Type 1 Diabetes. Now Tara had three diseases to cope with all taking their toll and she is engaged to be married. Like a trooper Tara faces up to the situation and goes on with her plans. She is 31 years old and wants to settle down and have a family.
My husband and I worked with Tara and her fiancé to plan a spectacular wedding and things were looking bright. The diabetes seems under control and I was in the midst of a new career as a designer for a local builder of new homes. Tara’s wedding went off without a problem and life was even again. Then trouble started. One year later Tara had a debilitating bout of Shingles. Then the diabetes got out of control with frequent low sugar seizures, her malabsorption returned and neither Tara nor her husband can cope with the mood swings. Two years later Tara’s marriage broke up and she was in the hospital for weeks at a time getting worse. Her kidneys stop functioning and dialysis begins. Kidney function returns but only 50% and Tara is unable to work. She is despondent and we feel helpless. The only thing that would give Tara the will to live is to have a baby. Motherhood we think is the answer.
Her father and I arrange for a surrogate pregnancy in California. Tara came home and the malabsorption lets up a bit. It is Christmas, 2007 and the baby is due Jan.10, 2008. Tara went to California two weeks early to await the birth and became severely dehydrated. She was hospitalized in the ICU and I rushed out to California. Her condition was critical but stable. Our beautiful granddaughter was born on her due date and I checked into the maternity ward to care for her. Her mother was in ICU in the same hospital.
Tara was stabilized temporarily for the trip to NY and then immediately admitted to a local hospital for hydration. A dynamic and “out of the box” thinking Gastroenterologist tries a new medication. It would require many injections a day along with all the insulin injections but it worked. Diarrhea was gone and Tara could come home and take care of her precious baby.
Two fairly good years pass and then the diabetes gets progressively more brittle. Tara was back and forth to the ER. Ambulances were at our home twice a week. There was a young child at home to raise. Our family was overwhelmed. Tara needed a pancreas transplant quickly. The night before our appointment at Columbia University Hospital to arrange for the transplant all is quiet. When I get to Tara’s apartment with her daughter the following morning Tara was passed out in her closet with a large bruise on her head. She was unconscious. Her sugar level is 6. Tara remained in a coma for eight agonizing days and when she awoke she was not the same.
My heart is broken. Life as I knew it had ended for good. It was downhill from there. Tara suffered minor brain damage and was unable to understand why she had to take her medication. She argued and became hostile. The only person she was kind to was Anabel whom she still adored. But her judgement was so severely impaired that she walked onto a highway trying to cross a street and was hit by a car.
She broke both arms and her leg in two places. But she survived with surgery and rehab for three months. Tara learned to walk and function again. But by then she had lost her car, driver’s license and her child. The hospital called CPS and told them Tara was a danger to her child because of her lack of judgement. Anabel had been living with us all along so she was in absolutely no danger but my husband and I took custody anyway.
Once again Tara was back and forth to the hospital. She didn’t take her meds. She disobeyed the doctors at the hospital and would refuse treatment insisting on being discharged. Twice she tried to run away and was placed in restraints. I begged the hospital psychiatrists to have her placed in a rehab facility and not to discharge her. They said she had the right to refuse her medication. She was an adult. Not one psychiatrist would help me. As I write this I am crying remembering all Tara went through in her 42 years. And then she just gave up. Tara would not get out of bed. She refused all nourishment. I couldn’t let Anabel see her like that. It was so hard for all of us to watch. And just one week after her 42nd birthday Tara died.
My journey continues. I have a wonderful daughter who lives out of town, an amazing husband who has been through this entire journey with me, never wavering in his love and support and the most fabulous eight year old granddaughter to care for. My relatives and friends were always there for me and continue to help with their calls and emails.
Our family moved to Florida, bought a house and started a new chapter in our lives. Yes, my journey continues.
You can find her fabulous company HERE or on instagram @educationathome