Amber
I remember so vividly the day I was told that Amber has something wring with her heart. She was only 8 weeks old and had just been discharged from the hospital after a 10 day stay with pneumonia. I took her to our local pediatrician and he said he heard a heart murmur and referred us to Iowa city. My husband was out or town with his family at the time and I remember calling him in tears and trying to relay what the doctor had told me. I knew something was terribly wrong just by the way amber was behaving. She became so hot, tired and sweaty trying to nurse. She would just scream after a few minutes. Hungry, trying to eat, but it caused her so much pain she stopped often and cried. It was so frustrating. I did not know what to do.
By the end of three more weeks, we finally had our first clinic visit at University of Iowa Hospitals and Clinics. We prayed that the doctors were going to tell us it was no problem, she would out grow it. But that was not the case. After x-rays, EKG, and an echocardiogram, the doctors gave us the worst news we thought we could get. We were not prepared to hear that our daughter has a very serious and rare heart disease. We were immediately admitted to the hospital and started on drug therapy. We were so scared, angry and confused. Fearful of what the future would hold and not knowing how long a future we would be blessed with.
By the end of two days, the drugs had helped Amber so much. She was like a different baby! She could eat and rest comfortably. We were relieved but still full of many questions. Why? Why her? What did we do or not do? Could we have prevented it? What can be done to cure her? Nothing was the answer we received. Her “team” of doctors still had another test they wanted to do – a heart catheterization. So instead of going home the next day, Amber went to the cath lab for a very invasive test. The first of many she would under go. Well, the heart chat was more difficult than the doctors had planned on but she did come through OK and they said we could go home the next day.
That night, the horror began. She had blood in her stools and panic set in. A third team of doctors were called in – the surgeons. IVs were started, all food by mouth was stopped and more drugs were started. It was a nightmare. Doctors were arguing over the cause and treatment, Amber screaming from all the sticks and hungry. I had to refuse her and could not hold her because she kept trying to nurse! It was awful! So much for going home the next day.
My parents came the next day to take our small son home with them. I remember questioning God. Asking Him why? Please, why her? I remember my father telling me not to worry, keep praying. I replied, “Why, God isn’t listening anyway!” Well, my attitude did change and God did answer our prayers then and many times since. Ten days later, we did have our walking papers and went home. For a little while anyway.
Amber had 15 more hospital stays in the first 2 years of her life in Clinton and in Iowa City for pneumonia, heart failure, heart caths (each one becoming more difficult and risky) and heart surgeries. She even had her second birthday party in the hospital.
The second heart surgery, open heart this time, was the one I remember the most. Her surgeon was the best in the country but very blunt in his explanation of what he planned to do. Well, so it seemed to us. I can still feel the heart ache and tears on my cheek as I handed my little 13 month over to the surgeon, not knowing if I would see her alive again.
Because of the prayers, literally throughout the country, Amber came through the surgery better than expected.
We’ve had other hospital stays, clinic visits, and a pace maker implanted since then. But she continues to amaze the doctors with her progress, despite her diagnosis. The fear of the past still over comes us at times. Like when she gets a cough or her lungs start to fill, scenes from the past still come into our minds and the pain and fear try to take over again.
This was Amber’s story up to the time she was the speaker at “Make a Wish Foundation” benefit dinner.
Amber is now 23 and is still attending heart, lung, and pace maker clinics two times a year. Because of her heart problem, she now has pulmonary hypertension to an extensive degree. She has added 2 new meds in the last 4 years to try to help her. The pressures have not decreased but are not increasing.
We were told without them two years ago, she would have only one year to live so they must be helping. We have had more hospital stays, life flighted emergency trip to the hospital and daily battles because of her heart condition.
It is a must for her to mention her health condition to new employers because of the lifting restriction, inability to walk too many stairs, as well as frequent bathroom breaks that are required because of her meds.
The most heart breaking episode she has had lately was early this year when she elected to be sterilized. Her lung doctor has told her that a pregnancy would most likely kill her and her baby. Plus her meds cause severe birth defects. This was a hard choice for a young lady of 22 who dearly loves children and desires to be a mother some day.
Congenital heart disease not only affects the child and her family but if the child survives, it affects her life choices, employment options, relationships and daily activity for the “child’s” entire life. It never goes away. When asked – is she better now? “fixed”? The answer is still no. Research is desperately needed so someday the answer can be yes.
Kathy Hogan