The Complexities of Raising a Medically Compromised Child

The Complexities of Raising a Medically Compromised Child

For those who chose to bring children into this world, we naturally dream of a personal fulfillment and happiness. But perhaps, what we wish for the most, is the good health of our child, which eases the journey in pursuing one’s goals and dreams since we all know how tough life already is to live. If you are like me, the first thing you do upon birth after the initial awe of meeting and holding your baby is to start to examine them, hoping to be able to count ten toes, ten fingers and checking other body parts in hopes that your child is functioning normally. As hard as you try to not obsess, we tend to deal with concerns during the pregnancy as to if our newborn will be lucky enough to start life with few, to no challenges to face.

Many times abnormalities are not obvious and easily diagnosable in the early stages of life. It can be quite a trauma when you discover that your infant with a clean bill of health upon discharge from the paternity ward, is indeed suffering from a serious medical condition. This was not how you felt it was meant to be. For me, when our fourth son was born one month prematurely on Christmas Eve and then came from Special Care, we started to notice episodes when he seemed to stop breathing. His mouth would fall open upon falling asleep, his tongue falling back into the throat, followed by his apparent inability to breathe for a brief period. Thank goodness this wasn’t my first child for I am not sure I could have emotionally handle facing another pregnancy and birth with the possibility of confronting a similar situation worrying about another pregnancy and wondering if this would be the situation for another baby.

Ellen Lenox Smith

Back then, being born in 1982, sleep apnea was not being addressed widely. We somehow got through the baby stage and remained thrilled that he was still breathing and surviving. At one point, our other three older sons and my husband and I all chose to sleep upstairs and had him sleep downstairs, since his snoring rocked the house.

When he went off to college, we shared that if he was ever ready to pursue a medical remedy for his breathing sleep issues, we were there to support him. By this time, the medical field had a great deal of information about the causes of sleep apnea. Many more treatments were available. At the end of his first year of college, our son contacted us, seeking support and assistance with his breathing issues. It had now become quite apparent to him that the cost of not addressing the issue was becoming too high as nobody in his dorm wished to room with him as he would interfere with their sleep.

Thus, another very difficult journey began for our family for, it was discovered he had an enlarged lingual tonsil. The treatment was for the tonsil to be lasered and this was to be done in Boston. The initial surgery failed to provide the necessary relief. Medications only intensified his suffering as he would react negatively to them. The family watched him suffer after healing and test results showing no improvement. In time, after enduring eleven surgeries, his doctors finally decided to move both jaws forward to attempt to open the airway for he was living with oxygen levels in the high 80’s. The doctor could not understand how he was not mentally deficient due to this but instead, despite feeling lousy and tired, he pushed himself in high school and became active with the swim team, creating a band and class president. This suffering young man was accepted into Brown. He was our role model for the family to not give up and live the life you were given.

Once again, all went wrong for this now eleventh surgery with the jaws. What was scheduled as a six-hour surgery became eleven since twice, after completing the work and laying him back, all the plates and screws fell out of position. So, he was sent to the ICU where he then stayed for ten days, waking up to his mouth having to be wired shut to give the jaw a chance to heal. However, he was already living with continual nasal congestion, so breathing through the nose was intermittent. So, we took turns and remained by his side in the ICU to suction his nose so he could breathe. To this day, we can’t even think about this without almost feeling like we have a form of PTSD.

My point of sharing this story is that when a child has medical issues, we are left as parents having to make major decisions for their lives. Since none of us know what outcomes will be, we must weigh out all the sides and make an educated decision and cross our fingers that all works out as planned in the end. Despite the decisions we had to make, good results didn’t happen until the twelfth surgery, when a year after the jaw surgery, the plates, and screws that he kept reacting to were removed along with the tonsils. Then, improvement began to show.

We were afraid he would resent our decisions and not find peace and happiness in his life with all he had to cope with at such a young age. Fortunately, the results after all that horror turned out to be amazing. Today he runs a business in NYC, is happily married and awaiting the birth of his second daughter. The quiet, initially introverted young man that was suffering for years is today the most compassionate, kind person who sees the good in people and life and always caring about others. He learned a lot at a very young age – to be grateful, loving, compassionate and live life to the fullest not knowing what tomorrow will bring.

I am sure that those of you that are parents have stories of those times you had to make decisions for your child. So what can we do to help lessen the burden of this problem we all have to face?

  • According to Dr. Heidi Collins:
  • the sooner we can include the child in making medical decisions and prioritizing them, the better.
  • Share information
  • Develop a care plan
  • Keep up good communication
  • Make changes when necessary
  • Seek extra support
  • She also suggests at home:
  • Try to stay on schedule
  • Try to be consistent with limits, rules, and your expectations
  • Encourage opportunities with friends and ways to be active
  • Create a balance among school, symptom management and having fun
  • Take time to talk about the condition and living life safely
  • If you or they are struggling, consider taking a health professional day off
  • Be sure to know how much to share with others by talking with your child – who needs to know and who will tell them
  • Try to encourage and work towards independence and self-management as they mature
  • Being open and honest goes a long way
  • We need to educate our children about their condition but also not scare them into learning to live life, despite their obstacles.
  • We must bite our tongue at times as they develop, to not stifle them and make them scared of their bodies and their life to live in them
  • We need to find safe avenues for them where they feel part of life with other children, so they don’t feel left out.
  • We face concern but we need to try to not place this onto them – they know how they feel and all they must face but need us to be the strong ones for them and swallow our worries in front of them.
  • We need to be sure they don’t fall behind with their education while dealing with medical issues making sure the school is aware of the battle ahead and willing to either tutor them or send the work home when they are able to take it on.
  • We need to live by example – it’s not fair to tell them, for instance, to go do their required workout and then not do our own.

As parents, confronting a child’s serious medical problem stands without a doubt as to the greatest personal challenge and a potential threat to your own emotional well-being. One of the toughest times we had was having medical issues to face with our four sons. Three of our four sons inherited my Dad’s glycogen storage disease Type IX along with wondering if they also are facing my EDS. They are all adults now and have a life to live and decisions to now make on their own. But the time frame when they were younger and in our total care, it was emotionally stressful to experience their times of suffering, times of being isolated due to recuperations and not able to keep up with friends. But, in the end, we were fortunate to watch them all become fine upstanding citizens making good health decisions in life. We were lucky and are grateful but know it isn’t that way for you all.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Linda

This is so inspiring to me Ellen, Thank You! It’s just what I needed to hear today!

Thomas Kidd

Thank you very much Ellen. Great advice. So glad that your son survived and the suffering and hardness of his life has made him a very loving and strong man. I to had sickness that taught me to be the man I am today. God bless you and your wonderful family.

aisling murphy wall

Brilliant Ellen your a star