Tuesday, 30 December 2008

• Heart Story

  Below is the letter I was asked to write for First National Congenital Heart Lobby Day. There are several families heading to Washington to lobby on behalf of our children. This is just one of thousands of stories. I hope that our story is heard and that it makes a difference. I thought I would share with you guys because I know you will give me honest feedback.

   

   

   

  Our story begins like most I would expect. My husband and I were expecting our second child together, our eighth in all. I had undergone two ultrasounds during my pregnancy and neither of those ultrasounds showed any problems with Emily’s heart. Four hours after Emily was born, I was told that it was suspected that she had Down syndrome. Never would I have thought I would be thankful for such news, but with that diagnosis, it meant the doctors were going to focus on her heart.

   

  Two days later it was determined following an Echo that Emily had two significant holes in the lower chamber of her heart. She had only three chambers as a result. Our quick hospital stay to give birth turned into twenty-five days, and we were the lucky parents. Others I have met have stayed months on end in the hospital.

   

  Having to leave five children in the care of relatives was devastating for our family. Our family was unable to financially handle my husband remaining off work for the duration of Emily’s hospital stay and so the burden of the day to day care fell to me. Both my husband and I were torn between life outside the hospital and life inside. My then two year old son only saw me about twice the entire time Emily was in the hospital and didn't get to meet Emily until she was finally released.

   

  Emily came home weighing a fairly decent seven pounds, but over the course of the next several months only gained about four more pounds. She was seen by a cardiologist twice a month for seven months. Due to her failure to thrive at three months old, she was placed on two heart medications. She was unable to do things that a normally healthy infant would be doing. Her siblings were all aware that the day would come that she would have to have major heart surgery and were unsure of how to act with her at times.

   

  Because of the weakened state of her heart, Emily was hospitalized two weeks prior to her first scheduled heart surgery for an infection. She spent five more days in the hospital, which meant once again, my children were left in the care of relatives. Our family was once again struggling with the financial aspect of my husband losing time at work due to the latest family crisis.

   

  At eight months old, one month past the original date, Emily underwent open heart surgery. At the time she weighed twelve pounds. She spent another six days in the hospital recovering from the surgery. She will forever have a “zipper” on her chest and will be followed closely by a cardiologist for the rest of her life. While the chances are quite small another surgery will be required in the future, it is always a possibility that we live with.

   

  What most people do not realize when hearing about a child with CHD is, a simple cold is not a simple cold. It could be the thing that places her in the hospital for weeks at a time. Each sick visit to the doctor requires blood work and often times an Echo. My daughter will always have a heart defect and will always be forced to undergo far more invasive procedures than most children as a result.

   

  Our family was very lucky. We live in the same city as the Children’s Hospital where the surgery took place. We had health insurance in place that covered all of her needs. Not all families are as lucky. Many will have to travel a minimum of fifty miles to reach the hospital that is equipped to deal with their child’s condition. Some have insurance that doesn't cover all or any of the expenses. Even those that do are still faced with the cost of hotels, food, travel, childcare, etc. Until you have lived this life, you do not realize the expenses involved go far beyond the hospital bills. You also can't put a price on the cost of the time spent away from the rest of your family while you are dealing with the long hospitalizations.

   

  Strong marriages are often tested during times like this. Your children remaining at home are wondering when you are ever going to be home again. Often there is resentment that the sick child gets the attention. It goes far beyond hospital stays and bills. It affects every aspect of your life.

   

  To put it bluntly, my daughter’s heart condition could have been detected with the ultrasounds and simply wasn't. My second ultrasound lasted over two hours and two tech's were called in to find that missing fourth chamber. More training, more research, more knowledge needs to be implemented so that other families are not faced with what my family faced.

   

  Emily is now almost two. Again, we are one of the lucky families. Emily is doing well and we have high hopes for a totally normal life for her. I spent one day adding up the expenses of those eight months of care for her. At last count we had over 600,000 dollars in medical costs. Once again, for us we had the coverage necessary and were responsible for very little of those costs. Not everyone is as fortunate. I was speaking to another mother and due to her son’s pre existing condition; she is unable to obtain private insurance for him. This is a five year old child and he will never be able to obtain health insurance for himself as an adult.

   

  Emily will have the same difficulties when she turns eighteen. There is not an insurance company in this country that would insure her with her health conditions.  This is something my husband and I must plan for today. 

   

  Every child deserves proper healthcare not just the healthy ones. Please place yourself in our positions. Our children deserve to live happy normal lives. Please do not punish them simply because they were born with health problems.

   

  In closing, I still consider us a lucky family. Less than two months of her first eight months of life were spent in a hospital. We had the best insurance possible and our daughter is doing well. What I can never measure appropriately is the toll those eight months took on our family. We survived and now it is time for us to live. Thank you for your time.

   

  Angela Aguirre

  Mother of Emily Aguirre

  Down syndrome, CHD

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