Shanley
The day my husband and I found out that we were expecting our first child, our lives were filled with joy and excitement. My pregnancy went very well and after being 1 week past my due date we decided to induce labor. I never imagined feeling so much joy and fear of becoming a first time mom at the same time. The minute our daughter was born she seemed to be a perfectly healthy baby, except that half of her body was a purple color. The Doctor told us this is common. My thoughts were that she is the most beautiful baby I have ever seen and there could not possibly be anything wrong with our baby. A few hours after she was born the nurse came to take Shanley to do some routine blood work. The nurse told me that she would have her back in my arms within the hour. I laid my head down and fell asleep. I suddenly woke up and looked at the clock. It had been almost 2 hours since she left. A fear came over me and I quickly woke my husband up and explained to him what the nurse told me, I then called for the nurse. A few minutes later the nurse and the pediatrician along with my doctor came in to talk to us. I never had been so scared in my life. They explained that there was a problem, and can’t quite pin point what it was. They needed to put her on a medication to keep her ductus valve in her heart from closing. Besides the shock of all this we had no clue as to what this meant. They then explained that a Flight team was on its way from a major city where we live to life flight her to a major hospital.
Here we are just a few hours ago, proud new parents and now we are scared for her life is in danger.
The flight crew brought Shanley in for us to see her before she left and gave me a Polaroid picture of her. She did not look like the same healthy baby I saw just a few hours ago. She had all kinds of wires and IV’s surrounding her, and even more purple in color. As soon as the helicopter left my mother drove my husband to the hospital they were taking Shanley to. I was released within 12 hours of delivery and on my way to join my husband and baby girl.
After 2 days of tests and meetings with many doctors we finally found out what was causing her to be sick. She had Coarctation of the Aorta, part of her Aorta was blocked off and needed surgery to repair the problem. Shanley had a successful surgery the following day. Finally after Shanley was 1 week old my husband and I got to hold her since birth. Everything went well and we all came home 2 and a half weeks later. Not only did I fear bringing home a new baby as a new mom, I feared of her condition, so many things to remember and watch for.
When Shanley turned a year old we returned to the Doctor for her second follow up visit. Shanley needed a procedure called valvuloplasty. We spent one night in the hospital and were able to return home.
When Shanley turned two years old she needed the same procedure as the year before. Again Shanley stayed for only one night and then back home. After this surgery the Doctor then briefly stated that they did as much as they could but can’t overcorrect because of the other problems. At this time my husband and I were stunned. What other problem? He briefly explained that the left side of her heart was all together smaller than it should be. The doctor then informed us she would need more surgery in the future but she was too small at this time. My husband and I were very confused, this is the first we heard of another problem besides her COA. During the first three years Shanley spent a lot of time in the hospital. Shanley had pneumonia, RSV, and even whooping cough. After the RSV, Shanley was diagnosed with asthma. Shanley never had just a cold; it always developed into something worse.
Just after Shanley’s fourth birthday we returned for all the routine exams with the Doctor. The Doctor expressed that this may be the time for surgery, but needed to discuss Shanley’s case with the surgeon at a conference. After a week of very long days and sleepless nights I received a phone call at work. Shanley needed to have surgery to repair or replace two major valves and we needed to make an appointment with the surgeon. I rushed home in great shock, I called my husband immediately. We called and made an appointment to visit with the surgeon.
Shanley was then diagnosed with Shone's complex. The aortic and mitral valve needed to be replaced by using metal artificial valves.
The Doctor took a lot of time discussing the surgery and explained that she will go on by-pass during the surgery. We were told about the risks involved in the surgery. We did not discuss details of anything going wrong, as we had a greater risk of heart failure without the surgery. Shanley will be on blood thinners the rest of her life and a few other medications for a short time after.
Three weeks later we entered the hospital for Shanley’s fourth surgery. Expecting the surgery to last four to five hours my husband and I prepared ourselves as much as we could.
The first valve was replaced then the second, then some small repairs. The nurse called every hour to keep us updated. We got a call telling us they were finished and getting ready to go off by-pass and close up. At this time my husband and I along with all our family were filed with relief and thankful everything went well. As what we thought the final hour passed by and we got the call from the nurse. Shanley is slow coming off the by-pass and to hang in there. I began to feel the fear again that something was wrong. With my husband at my side we began to pray. Shortly later the nurse walked into the waiting room. When I looked at her face I immediately knew something was definitely wrong. The nurse explained that Shanleys heart was just not strong enough to do all the work herself. At this point we had know idea what was even going on. The nurse stated that Shanley’s heart needs to rest and heal. What does this mean? She then explained a machine called ECHMO. This is a by-pass life support system. They were waiting for the ECHMO team to arrive to place Shanley on the support. My next question to the nurse was what if her heart doesn’t want to work in its own after this. All the nurse did was shrug her shoulders. The emotional roller coaster cannot be described. I thought the world was ending, and feared so much that I would never be able to hold Shanley in my arms again.
After 10 very long hours in surgery and ECHMO in place Shanley was taken to PICU. We were only aloud to see her a few minutes at a time. There were so many more risks involved now. Shanley’s chest was left open because of the ECHMO and this became a risk of infection. Another risk was that the ECHMO machine could fail at any time. At this time the doctor gave us a fifty-fifty chance of Shanley getting thru this. We never expected anything like this could happen to our baby girl. My husband and I sat beside her feeling so helpless and knowing that everything was up to her, she must fight as hard
as she can. We talked to her all the time trying to encourage her to fight, and telling her that all of our family was outside waiting to see her.
Five very long and tough days later the Doctor decided to do a trial off. This is where they turn the machine off but keeps everything hooked up and sees if her heart is strong enough to work on its own. The trial off was successful and the next morning she was life support free. Two days later she was taken back into surgery and had a pacemaker placed in. Just hours after the surgery the doctors told us it was time now to start waking her up and letting her breath on her own. The doctors and nurses prepared us for what to expect when she starts to wake up. Shanley had been on very high doses of narcotics and paralyzing medications she will now start going thru a withdraw period, and not for sure if there will be any damage to her body until she wakes up. The next several days were very tough as the nurses and doctors warned us. Shanley started physical, occupational and speech therapy, therefore she improved every day. Her CAT scan results were normal so no damage had been done. At this time my husband and I new we had a lot to be thankful for, she could have been a lot worse, however we didn’t think so for several days. Three and a half weeks later Shanley returned home from the hospital. Shanley went to a lot of doctor appointments and therapy came to the home for the first few weeks. Because of being on blood thinners Shanley has blood work every few weeks and is on a heart medicine to make her heart beat stronger.
Shanley is doing very well now. Shanley has retained all of her memory from before her surgery, however she still has no idea how long she was in the hospital.
Shanley will have more surgeries in the future. She will out grow her metal heart valves and pacemaker wires.
Just 3 months after Shanley’s surgery, our pediatrician heard a heart murmur in our one-year-old son. Bailey was diagnosed with Aortic Stenosis in January 2000. Although Bailey’s heart disease isn’t as severe as Shanley’s, we now worry for both our children. We do not think about what’s ahead right now, we live day by day and enjoy our time with our children.
My Husband and I along with Shanley and her little brother Bailey, we thank our family and our friends for all the support they have given us. We truly believe that all the prayers and the support given help us live each day at its fullest.
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