dna2life.com - congenital heart disease - a case study
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DNA2Life.com - Congenital heart Disease - A case studyTRANSCRIPT
Congenital Heart DiseaseA Case Study
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DESCRIPTION PAGE NO.
1 TITLE- Regaining Life Fighting Congenital Heart Disease 3
2 INTRODUCTION- Brief Synopsis 3
3 Symptoms- Syndrome of Disease 4
4 Doctor’s Opinion- Advise about the ailment 6
5 Our reaction-Reaction of the family members 7
6 Treatment and Reason to change the hospital 8
7 Life after her discharge 10
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Regaining Life Fighting Congenital Heart Disease
My daughter Sarah was just seven years old when she was diagnosed with a congenital heart disease namely “Tetralogy of Fallot” and also we encountered the fact that she was born with a missing pulmonary valve, the passage that leads from the heart to the lungs and discharges the blue-blood to obtain oxygenation. Due to which the normal flow of the blood through her heart had changed giving her breathing complications. Then, after some time, we also got the shock of our lives when our daughter was detected having DiGeorge Syndrome with multiple pulmonary and cardiac aneurysms in addition.
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Symptoms
Since her birth, we knew that she was different from other children. She often had breathing problems, and moreover she could not talk for many years, almost till she was 5 or 6 years old, and always used sign languages to speak to everyone, which was definitely not normal for a girl of her age.
She could not intake the breast milk as her breathing complications were not allowing her to suckle and that is why she could not gain weight. She was much underweight than any other child of her age. I used to drop some milk in her mouth when she was asleep and then only she could take it. This is how we make her put on a very little weight .
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She was affected by fatigue, when we played with her, she used to get tired after just a moment; she was also losing her healthy skin color day by day. Some days later, we also noticed she had swellings in tiny her legs, abdomen areas, and under her lovely eyes. Sarah also used to suffer of lung infections regularly.
When she was of 2 or a little more, we found that she was having problems in speaking and she could not learn as all other children of her age do. We also put her in school, but due to her long illness, she could not even go to school or meet with other children of her age. She had no friends except me and her father. We were always so worried about her.
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Doctor’s Opinion
We took her to best pediatricians and after a few tests and looking at all these symptoms that my daughter has, they told us that my Sarah has heart difficulties and then suggested us to consult heart specialists. We went to the best heart specialist in our city then, and after looking at her echocardiography reports, the doctor confirmed that our Sarah had Tetralogy of Fallot, a missing pulmonary valve. And doctors also looked at her other complexity in speaking and referred another tests including chromosomal testing and after some time she was diagnosed with DiGeorge Syndrome and multiple pulmonary and cardiac aneurysms.
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Our Reactions
I and Sarah’s father got really worried that our only daughter was suffering with such a complicated heart disease which can lead her to a fatal result. But we refused to lose hope. We put our complete faith in God and got many prayers for our little daughter. All our friends and relatives prayed for the recovery of our little child. They also arranged special prayers in the church for our little girl’s revival. We were overwhelmed with their response and their prayers gave us the influence to fight all difficulties.
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Treatment and Reason to change the hospital Initially, we went to our local hospital to know if there any light of hope and initially
they showed good response. But due to her delayed detection of the DiGeorge syndrome, they delayed her operation schedule, they were also not sure of the results of this operation. Days from my Sarah’s life were falling short due to the unsure decisions. Her complexities were growing and she was falling ill day by day.
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Then we went to the Mayo Clinic, one of the best hospitals in USA. They offer the best of the Cardiac Surgeons in the entire city. Our daughter has undergone an open-heart surgery under the specialized team of Pediatric Cardiologist and surgeons who are specialized in Pediatric Cardiac Surgery, Neonatal Cardiac Surgery and Congenital Heart Surgery. They took a reasonable time to operate our daughter and completed the task of saving our daughter successfully. With the care and treatment of the careful and living nurses and friendly doctors my daughter started reviving her health.
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Life after her discharge Now my beautiful Sarah is eight and five month’s old doing quite well after receiving
their special treatment. A month ago she went again under knives as her pulmonary valve was calcifying, and we are aware that this will happen again and she has to be open for many other heart surgeries. But at present it is not anything less than a miracle that we, specially my little Sarah has made it this far and we will be open for other possible recovering processes. I and her father prayed days and nights so that she can start talking, and now she has started talking and we cannot hold her back from chattering.
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Due to her long illness and her open exposure to infections such as Human respiratory Syncytial virus which can further complicate her positions, the doctors have suggested restraining her presence in her school and anything that might carry the chance of getting her infected. That is why she is yet to revive all her vivacity and mix with the world outside. But still, all her activities contradict her illness and shows how joyful she is.
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As she cannot go outside especially during winters, we have installed every possible means of entertainment in our home itself along with a garden pool. And it is astonishing to see my daughter’s glowing face with happiness when she goes to the pool. There is really no similarity with the life that we live with that of any other people, but we believe that our Sarah will fight against all odds and will be victorious in all her life.
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