Baby Klay Khalil Lustre Story
Written by Mrs. Anna Jade Lustre
Baby Klay Khalil Lustre was diagnosed with a rare genetic disorder, called PFIC (Progressive Familial Intrahepatic Cholestasis). It was not until after the Liver Transplant when they found out that Baby Klay had the disorder.
It all started when we noticed he was itching excessively. For a newborn, he was irritable than normal and was always crying. He could barely sleep for an hour straight, he was scratching and scratching on his entire face, his eyes, his ears, and his body. At first we thought it was just a habit, a severe allergy, or Skin Asthma, so we took him to his pediatrician and was prescribed hypoallergenic soap, creams, lotions. Until it came to a point that sometimes he would scratch so hard, there would be blood already on his scratch marks, it was as if he would like to claw his entire skin out to control the itch. It was unbearable for us to see him like that. But we have no choice but to manage it the best we can. Along with this, we also noticed that he was not gaining weight. On his 3rd month, his eyes, and skin started to turn yellow. his wounds from his scratch also bled a lot. Sometimes it was even hard to stop with just a cotton we need to apply pressure for it to stop. He also began throwing up every after feeding, his tummy became bloated. We took him back to his pediatrician, and tests were made which revealed that his liver function is impaired. His Doppler ultrasound confirmed his rapidly progressing cirrhosis, developing portal hypertension, and an enlarged spleen. More laboratory and radiologic tests were done, except for a liver biopsy as his protime level (clotting factor level) was already deranged. “He has a very high risk of bleeding out,” his pedia gastro said. and though Biliary Atresia and other known Pediatric Liver Diseases were ruled out, we were still left with an unsure diagnosis, which added to the emotional burden even more. But one thing was certain, time is running out for my baby and he needs a Liver Transplant soon.
Being just an ordinary employees, we knew it would take us years before we can come up with the amount for the transplant. That was such an emotional and extremely difficult time for us, since Klay was already showing complications of his disease, having countless hospital admissions that ran our pockets empty, our eyes of tears, and our hearts of hope. We were clearly racing against time for his life. So we decided to fight. We started building his transplant funds. We began fundraising. We sold T-Shirts with inspirational verses for a Cause, we sold snacks like nuts, chicharon, cookies and sweets. We started decluttering and sold preloved stuff, held garage sale. and lastly, loaned our house to the bank and asked Family, and Relatives for help. It was a blessing that we became a part of the LITRO Family Support Group, where we came upon to know an International Foundation, and Apollo Hospital, which paved the way to his transplant. We also took to Social Media and we were unbelievably overwhelmed with the response. 3 months after, and 5 potential liver donors tested, we were able to fly to India for the Transplant.
By the grace of God, he had his life saving operation on November 13, 2018. When the deceased liver was taken out of his body, it was subjected to tests which then revealed his true diagnosis. his true disease that almost didn’t make him reach his 1st birthday. We thought, along with the restrictions that came with being a post transplant, we would be able to come home after the usual 60 day recovery period. But Klay’s recovery turned out to be an uphill climb. It was challenging and filled with setbacks. But Apollo’s exceptional Surgical and Pediatric Team worked hand in hand, left no stone unturned, options untried, and tirelessly took care of my baby. All the improbabilities, obstacles were overcome. After 133 days in India, we were able to come back home.
The road ahead is still long, our journey is still far, in fact it has just started! And some paths would be rough. We may not know what tomorrow holds for us, but we are certain of the ONE who holds our tomorrow. Everyday with him in his most healthy state ever, is truly a GIFT.
Baby Elle Wenceslao Story
Written by Mrs. Kaye Wenceslao
As a first time mom, I never knew such joy and love existed when I gave birth to my first child, Elle Wenceslao. Until suddenly, the joy was snatched away when she was diagnosed with Biliary Atresia.
Elle was 7 to 8 weeks old when her Pediatrician noticed that she was jaundiced, the whites of her eyes looked yellow, her urine was dark and she had pale, almost white colored stool. Her Pediatrician immediately endorsed us to a Gastroenterologist and recommended an urgent liver biopsy. She was already 4 months old when she was diagnosed with biliary atresia.
It was so difficult to see your precious tiny baby in pain from all laboratory procedures. It hurts so bad that my husband and I would cry ourselves to sleep. We were so afraid of losing her.
When Elle was diagnosed with this deadly disease, it felt like I was in a dead end. We went to many Specialists but we just received devastating news over and over again. It seemed like no one can ever help my child live. I will move the world just to save my child. But I just felt so helpless, hopeless and powerless during that time.
So I fought everyday with faith and told myself that if doing anything for my child means waking up everyday with courage despite the overwhelming fear, I will strive to be the bravest person. So I got up again and dust myself off, and did more research. If I cannot move the world, I know WHO can. No other than the Maker of the world, Himself. Then an answered prayer.
I met someone and connected me to LITRO group on Facebook. I was so adamant to join at first because It makes me more depressed seeing photos of babies with their big tummies, who looked so frail and sick. Then one day, I got a message from Miss Jonalyn and referred me to Apollo Hospital. Then slowly, I got to see this other part of Litro where they post photos of healthy babies after their successful liver transplant in Apollo Hospital.
Seeing photos of these healthy babies and reading their parents’ testimonials, proves the excellent track record of Apollo Hospital. Discovering Apollo Hospital was like seeing the light at the end of the tunnel. It gave me and my husband a new light and a new hope.
Travelling to a different country you are not familiar with can be scary, more so, to trust them with your health and life. But the moment I stepped in their building, I just knew my baby is going to be fine. she is going to live.
Preparing for the transplant, was so emotionally and physically draining. But the level of Apollo’s service and assistance to international patients like us, eases everything. Their staff eventually became friends and made our stay in India a beautiful and memorable experience. That even when we were at our downest, darkest time of our lives, we got to enjoy our stay and enjoy their culture. They truly give a world class service.
Elle is now 2 years and 5 months old, perfectly healthy and active as if she never got sick. I love how Apollo takes care of post transplant babies even if they don’t get anything in return. I appreciate them so much for visiting us once in a while. Our family will forever be grateful to Apollo Hospital.
Now I know why every Filipino family felt at home in Apollo Hospital. Filipinos are known for their hospitality. and that’s what we exactly experienced from all the people in Apollo Hospital; their genuine hospitality. Apollo is definitely a home away from home.
About Indraprastha Apollo Hospitals
Indraprastha Apollo Hospitals, New Delhi is the First Hospital in India to be Internationally Accredited by Joint Commission International (JCI) consecutively for the fifth time. It is one of the best multi-speciality tertiary acute care hospitals with over 700 beds in India and the most sought-after destination in SAARC region for healthcare delivery.
A state-of-the art modern facility in the heart of the capital, it is spread over 15 acres and has a built-up area of over 600,000 square feet. Currently the hospital has 718 beds with a capacity to expand to 1000 beds. Right from the infrastructure to the latest medical technology acquisition, Indraprastha Apollo Hospitals has always kept its patients first and strived to deliver not world class but the world’s best care to its patients since its inception in 1996.
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