May 16, 2005 being the WORST day of my life, was a day that every parent fears. I knew something was not right with my daughter as she had feeding difficulties and was not gaining weight. Upon her pediatrician detecting a heart murmur, she was referred to a cardiologist. An EKG and echocardiogram were done. After much waiting, and waiting, and waiting, the cardiologist returned with about 6 or 7 other staff including other doctors, nurses and social workers. I knew I was about to hear bad news. Mia's heart was severely enlarged and in failure. The doctor did not know why, but she prepared me for the worst as the prognosis of a heart in her condition is grim. I cannot even begin to explain how I felt, so I will not even attempt. Nothing can prepare you for such news. Mia was admitted into the hospital for a full metabloic workup to find out what was causing her heart issues. I was also told that 80% of the time when a child has cardomyopathy, they do not find the primary cause of the heart issues.
Almost 6 weeks later, we followed up with the cardiologist. When I arrived, the doctor told me that she had a diagnosis for Mia. She asked me to call my husband and have him come so she can discuss everything with both of us. I called Sean at work and told him to meet me at the office. This was the scariest moment of my life (well, up to this point, more came later).
Tomorrow, June 24th, will be five years ago that I first heard the words, "Your daughter has Pompe Disease." The only information that I knew of this disease was that it was fatal usually in the first year of life. I was told there was an experimental medicine showing some promise. Sounded easy enough, not quite.
This was an IV infusion that Mia would have to receive every other week. We needed to go to Duke University Medical Center to enroll her in the trial. It would take several months for the trial to be set up so that Mia could receive it locally. So much information was thrown at us, it was hard to comprehend it all.
We took Mia home and tried to absorb so much new information. We realized that life was about to forever change, no idea what to expect. We were thrown some hope and we hung on for dear life.
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Amazing. I can just relate in so many ways, from the worst day being told your child's heart is barely functioning, to the day we also heard those words "Your daughter has Pompe Disease". Mia has come SUCH a long way and every day I pray that Haley can be as strong as Mia is. She gives us hope. I am so glad we came to Duke at the time we did and met your family. I wish we could meet up more often, but you all are often in my thoughts and prayers.
ReplyDeleteLove,
Krystal and the Hayes Family
www.helpinghaley.com