In Loving Memory
of
Max Smith
November, 1993 - May, 1996
FOR MAX
When a child is born, every mother sets plans and dreams about a bright future for their child. No one expects those dreams to be cut short when their child suddenly dies in the night. The grief and pain of those lost dreams is unbearable.
When a child is born, every mother sets plans and dreams about a bright future for their child. No one expects those dreams to be cut short when their child suddenly dies in the night. The grief and pain of those lost dreams is unbearable.
For me, those dreams ended on May 19, 1996 when my son Max passed away in his sleep . What makes our loss even more tragic, is that neither his doctors nor the medical examiner could pinpoint the cause of his death.
After months of searching for answers we determined that his death was most probably due to Breathholding Spells, that we had been told were harmless. Now, as I sit in my living room, having just finished reading an article that also called my son's condition "harmless", I feel compelled to write Max's story.
Max was born in November 1993. He was a healthy, beautiful little boy who reached his milestones (crawling, walking and talking) very quickly. We attributed this to Max having a brother one year older than himself to imitate. But then suddenly, when Max was 9 months old, he began to have Breathholding Spells. These spells would be brought on when he became upset, or had a sudden injury (like crawling into the coffee table). Max would let out a cry and then on the second cry, he would be unable to make any noise. He would arch his body back and look like he was experiencing a seizure. He'd turn blue and pass out. Max would remain unconscious for what seemed to us like an eternity, but was actually less than a minute. When he'd come to, he'd be irritable, disoriented and groggy.
Understandably frightened and concerned, we immediatiely brought Max to his pediatrician who ordered an EEG, or electroencephalograph, which is the recording of brainwave activity. This test is used to diagnose seizure disorders, brainstem disorders, tumors, clots and impaired consciousness. The doctor also ordered a CAT Scan, or Computerized Axial Tomography, of Max's brain. This is basically like taking a picture of the brain. We initially suspected epilepsy and these tests were conducted to determine if he did, in fact, have epilepsy.
The results of both tests came back normal so we were referred to a pediatric neurologist who reviewed the results. She examined Max and asked us questions about his motor skills and development. At the conclusion of the examination by the neurologist she diagnosed Max as having Breathholding Blue and Breathholding Pallid Spells. We learned from her that "Blue Spells" are caused by emotion , fatigue, anger, sorrow or frustration, and after the seizure-like activity, the child turns blue. With the "Pallid Spells" a sudden injury or fear brings them on and the child turns pale rather than blue. She explained that a slight percent of children experience both kinds of spells and that most children outgrow them by four or five years of age. Further, she explained, these spells are strictly behavioral and they are not brought on by anything physical. She assured us that Max would not have any long lasting effects or damage from the spells. She emphasized that he could not have them in his sleep and that we should not worry as he would outgrow them.
Having seen the neurologist we felt somewhat better. It was still difficult to accept that there was nothing we could do for our Max, but we were assured he would be okay and would outgrow the spells. We learned to be on the lookout for signs of him going into a spell, so we'd be there to catch him before he could hurt himself.
Six months later the spells became much more frequent. He seemed to be having them daily, sometimes several times a day. We decided to get a second opinion. Again, we got the same diagnosis from the second neurologist. However, this neurologist added that the spells were involuntary on Max's part and it was the vagus nerve ( the nerve essential for speech, swallowing, breathing and other functions of the body) contracting which would not allow the passage of air. The second neurologist also agreed with the first that there was no treatment.
Armed with the knowledge of the connection with the vagus nerve, my husband and I began to hope that we could do something with Max's diet. Our thinking was that muscles contract and cause cramping when there is a lack of potassium in the diet. We began to give Max banana milkshakes. Remarkably, while his spells didn't go away entirely, they did lessen in frequency.
In addition to Max's Breathholding spells, he also had problems sleeping. From the time he was 1 year old, he had what is known as night terrors, not every night but frequently. He seldom slept through the night. He would wake up as much as 2 and 3 times a night and be very frightened. On occasion, my husband or I would sleep with him just to get him to go to sleep. He was a very restless sleeper. He would literally be bouncing all over the bed. We spoke with his physician about this and we were told that it is very common for toddlers to be restless sleepers and that some children never sleep through out the night. In retrospect, we believe there was a definite connection between his sleep disturbances and his Breathholding spells.
On Sunday, May 19, 1996 a week before he would have been two and a half years od, Max died in his sleep.
Our last day together was wonderful. It was a beautiful spring day. Max and his brother went with their dad to the park in the morning. In the afternoon we all went to a friends house for a barbecue. That night, we went about our usual routine. The boys took their baths, we had cookies and milk and read books before bed. At about eight o'clock, I turned out the lights and sat in the rocking chair for about fifteen minutes until the boys seemed on their way to sleep. Then I left their room.
My husband and I sat in the living room and watched a movie. When the movie was over, about nine forty-five, I went in to check on the boys. My three and a half year old was still in the same position that I had left him, but Max appeared to be sleeping at the foot of his bed. As I went to reposition him, I noticed something was terribly wrong. His body was limp, and as I put my ear to his back, I discovered he was not breathing! I yelled for my husband, who ran in and began CPR while I dialed 911.
The paramedics arrived and took over the CPR and we all rushed Max to the hospital. After about an hour, we learned Max was gone. And, worse yet, the doctors could not tell us what happenend. The answer, they hoped, would come from the coroner.
Our grief was and still is immense, but at that time it was even more tragic for us as we had to wait for many weeks for the medical examiner's report. We agonized as to what could have happened to our little boy. Did he have a virus? Did he have an internal injury that we were not aware of? Had he aspirated? Had he suffocated? We never related his death at that time to his spells, as we had been told they weren't harmful to him. We were very concerned that whatever took the life of Max, would be back to claim his brother.
After about eight weeks, the medical examiner said her tests were inconclusive and that she believed Max died of "natural causes". "Natural Causes"????????? We were beside ourselves as we grieved over how a strong, intelligent little boy could just go to sleep and not wake up.
Getting through each day and night was truly a struggle but somehow, lost in our grief, we made it into summer. One day, I was talking to a friend of mine who lives in Boston, and she suggested I get in touch with a friend of hers who had also lost a child. My friend felt that by speaking with another mother who had lost a child, it might help me with my grief. I contacted the woman and it turned out that she had a friend, a nurse, with two children that experience sleep apnea episodes. This nurse knew of a doctor who did extensive work with Breathholding spells, sleep apnea and vagus nerve problems. The doctor, Dorothy Kelly, previously had worked at Mass General in Boston, but had since relocated to Houston Texas and now worked at the South West Sids Institute there.
I obtained Dr. Kelly's phone number and at the end of August was able to make contact with her and tell her our story. She listened attentively and then asked me several questions about Max's Breathholding spells. Dr. Kelly told me that a small percentage of children do not have "normal or classic" spells, and that Max's were NOT normal spells! She could tell this by the age he began having them (nine months) and the description I gave her of the spells. She explained that a child who cries continuously and has a temper tantrum to the point of Breathholding and loss of consciousness is considered to have normal spells. They are harmless spells. However, she went on, a child who turns blue and loses consciousness on the first or second cry and then ceases to breathe has abnormal spells. These spells are not behavioral in origin, but are caused by an actual birth defect! I asked Dr. Kelly if an autopsy would reveal such a birth defect and she replied only if the medical examiner knew exactly what kind of small marking to look for on the brainstem, and most medical examiners would not know what to look for.
Dr. Kelly has been treating children with abnormal spells for years. She has performed sleep studies on these children and has found that bradycardia (slowing of the heart) can occur prior to the onset of a Breathholding spell. They can also happen while a child sleeps and be potentially fatal. It is possible that the heart slows to such a point and actually stops during the spell. Dr. Kelly has identified children at risk and has successfully treated them with medication until they outgrow this condition.
I felt it was important to tell our story about Max, for it appears that the medical community as a whole believes that Breathholding Spells are harmless and therefore they have not been pursuing answers or treatments for this condition. Further, they have not been conducting adequate testing to identify a child who has abnormal spells. In speaking with one of the neurologists who initially saw Max, I learned that another little boy died last spring during a Breathholding spell while he was awake. There is nothing that will bring our little boys back. However, perhaps awareness on the part of parents, pediatricians and neurologists that the possibility of fatal consequences exists, may prevent the tragic deaths of other little ones.
Since this page first went on-line, we have learned of 3 other deaths attributed to Breath Holding Spells, and we believe there have been more that we have yet to uncover.
Dr. Kelly is still treating children with Breath Holding Spells and Vagal Nerve Abnormalities. She has been able to help many children that have located her through this website. Additionally, the Southwest Sids Research Institute, where Dr. Kelly works, has recognized the need for research into Breath Holding Spells and Vagal Nerve Abnormalities. The Institute has voted unanimously to change the name of the center to the Southwest Sids and Breathholding Research Institute and will be devoting both time and personnel towards the research, treatment and education of physicians in the area of Breath Holding Spells and Vagal Nerve Abnormalities. They will be the first center in the Country devoted to finding answers and treatment for children with Breath Holding Spells. We will continue to update the site to advise when the Institute begins its research.
If you would like more information on Dr. Kelly or what we are currently doing to bring about awareness, or would simply like to share your story, please write, we are anxious to hear from you.
Dear Readers: If you have a child with breathholding spells, or have
lost a child and simply would like to respond to our webpage, Please email us
Please title your mail "Formax" as we
usually delete letters from unknown authors. We look forward to hearing from you!! For
information on support groups for those greiving a child please visit our web links.
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Max's Lullaby
©1999
Composed and Performed
as a loving tribute by his aunt
Nancy Moore
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