Marsha Maggard & Sammy
After reading the latest Matchmaker*, I felt inclined to write to you with my story. It seems that 1 am not alone (as I once thought). Many of the letters, opinions, and stories have touched my heart and have brought back so many strong emotions and memories, many that I had left unaddressed and unresolved. Now I have been forced to deal with some of them and I am one step further along the road to acceptance and recovery.
Our story is long and complicated but I feel compelled to tell the highlights of it. I had a difficult pregnancy, complicated with atrial fibrillation and abdominal pain, During the 23rd week of pregnancy I had an exploratory laparotomy and appendectomy for a near-gangrenous appendix. At 27 weeks I started having contractions which could not be picked up on a monitor, felt by palpation. or seen on ultrasound. I was told I was not in premature labor, but upon my friend's insistence I was later transferred to a tertiary facility, I was started on routine premature labor order/treatment and one hour later I had spontaneous rupture of membranes. After the maximum therapy of Mag Sulfate, I experienced a placental abruption and was rushed for an emergency C-Section.
My son, Jack Samuel Maggard III, was born at 27 weeks gestation and weighed 2 lbs. 4 oz. He spent 59 days in Neonatal ICU. I am told that his course in the NICU was relatively uneventful given his degree of prematurity (it certainly didn't seem to be uneventful at the time we were going through it). He was treated twice for sepsis, received blood transfusions, had a Broviac insertion, and had desaturations because of apnea and bradycardia We brought him home with an apnea and cardiac monitor on Thanksgiving Day, 1995.
The next few months were like a roller coaster ride. We were so pleased when Sammy started gaining weight. However, we became worried when he began gaining over a pound a week and started having swelling in his arms, hands, feet, legs, face, and abdomen. He was often crying and irritable. We carried him on a pillow because he seemed to be in pain. He often had strange skin problems and easy bruising, especially petechiae immediately before any kind of respiratory illness. He was regularly followed by the neonatologist and pediatrician. He was hospitalized for pneumonia and RSV during the winter.
We knew something was wrong with this child other than his prematurity and "personality" which we were often told. Our pediatrician chased the petechiae and strange bruising to no avail. He listened patiently but could come up with no answers. In February of 1996, 1 called our pediatrician and pleaded with him to help us. I told him that, as Sammys mother, I knew something was wrong with him and that if he didn't help me I would get out and walk with him up and down the interstate until I found someone to help us.
He met me in the office and felt that Sammy had a septic arthritis in his shoulder. We were sent to East Tennessee Children's Hospital ER, where he was found to have several fractures on x-ray. Child abuse was initially considered, However, after several appropriate consultations (geneticist, hematologist, orthopedic surgeon) and obtaining a complete history and physical exam, Sammy was diagnosed with Osteogenesis Imperfecta and the abuse issue was dropped. We finally had a diagnosis. What a relief. What a horror! We educated ourselves, our families, and our friends about Sammys diagnosis and started to cope with the day to day stresses of caring for a seriously ill child with special needs. We somehow made it through that winter and into spring and summer.
We were referred to Shriner's Hospital for Crippled Children because of the possibility of needing their services in the future. A physician at Shriner's had the opinion that Sammy did not have OI (Osteogenesis Imperfecta), that he was being abused. He misled us as to why he wanted us to return to Shriner's for a CT Scan. Sammy was admitted and we were kept for 4 nights against our wishes. Social Services was contacted and a investigation was begun for non-accidental trauma. This physician took steps to attempt to have our children removed from our home and placed in foster care. He made threatening comments and accusations. He refused to took at old records and x-rays (I carried copies of everything with me) and he subjected Sammy to repeated unnecessary testing and x-rays.
Social Services followed up with us in the home after discharge. Our friends, family, and co-workers were interviewed. Physicians were contacted and medical records were sent for. They explored the issue of Munchausen Syndrome By Proxy. After a month of pure torture, social Services found the accusation to be unsubstantiated and the chief worker has written a letter in our support. Still nothing can erase the scars that were left. Our family is the victim here. We were abused by a physician and the system. I am afraid for others who may fall victim to the same abuse. We have a strong family with a lot of support, yet it was all we could do to survive this- How will those who are not as fortunate as us survive?
Sammy has Suffered approximately 28 fractures and has twice been in respiratory failure due to splinting from pain. He has also been hospitalized for a second case of RSV, asthmatic bronchitis, and once for apnea. He has reactive airway disease, GE- reflux, and an umbilical hernia. His weight is normal but his height is below average. Very little about him seems to be typical and it has taken a year for the people closest to us to become comfortable with him. It has been slow gaining ground, but now Sammy is moving forward in leaps and bounds. He has learned to walk, he is beginning to talk, and he recently started attending daycare! God has truly blessed us.
I would be glad to talk to anyone who is in need of support or anyone who has questions. I don't know how much help I can be, but I feel I must share our experience. It seems that we have had to fight and struggle when dealing with each and every aspect in our lives for the past 22 months, even the expected and those things which should come naturally. It is terribly difficult when you have to fight for your child or for what your child needs, when all you want to do is sit and hold your child and protect them from the world.
*The Matchmaker is the MUMS (Parent to Parent) Newsletter. Marsha's letter was originally written to MUMS and reprinted here by permission.
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