Mom of baby with Biliary Atresia shares: "We will continue to fight to save our son's life"
A first-time mom opens up about the hardest struggle in her life--a life-threatening condition that struck her beloved son. Read her story, here.
Her firstborn son Jed Allen was only two weeks old when 27-year-old Margie Marcos-Dolores noticed something was wrong.
“His skin and eyes have turned yellow. I thought it was just a physiological jaundice, but I started to notice that his navel was inflamed and I immediately brought him to a pediatrician,” recounts Margie in an interview with theAsianparent Philippines.
Jed Allen, who’s now 8 months old, was then confined due to sepsis and omphalitis, or infection of the umbilical stump. Eventually, he was discharged, but a week later, Margie was stunned to find that her baby’s stool had turned white. Panicked, she brought him to the pediatrician.
“This time he underwent some bloodwork and when we got the results we were then referred to a gastroenterology at Manila for our baby to be assessed further,” recounts the stay-at-home mom, who lives in the province of Catanduanes, which is an hour-long flight from Manila.
“Once in Manila, we immediately went to Philippines Children Medical Center and was admitted immediately for suspected biliary atresia. After two weeks of confinement, the attending doctor finally confirmed that our baby had what was initially diagnosed of him,” she recalled. Aside from white-colored stools, her baby boy had dark tea-like urine, was irritibale, and suffered from itchiness.
Biliary atresia is a rare, life-threatening condition, which is particularly dangerous when found in infants. It occurs when the flow of bile from the liver to the gallbladder is blocked. Bile is essential in breaking down fats and excreting waste products. It usually appears two to eight weeks after birth.
Learning her only son had been diagnosed with potentially fatal disease was nothing short of devastating.
“Being told that our son is seriously ill and has a limited life expectancy without a liver transplant is a painful and heartbreaking feeling,” confides Margie. “It is so easy to be depressed and feel so hopeless. This is the hardest thing to go through as a parent and every day I pray that I will soon see my son in good health.”
While in the hospital, Jed underwent the Kasai procedure, wherein the intestine is attached directly to the liver, allowing proper bile drainage. This will also help the liver function better. Blood tests, monthly checkups and a biopsy were also done to monitor his condition He was also given medication and vitamin supplements.
“Unfortunately, the operation did not improve our son’s condition. The doctor told us that the last resort for our baby’s survival is a liver transplantation,” said Margie.
At present, Jed Allen is still jaundiced and experiencing the same symptoms. On top of that, he is not gaining weight like he should.
“He is also having a hard time gaining weight despite of the complete sets of medications and supplements,” she continued. He was also hospitalized because of an ear infection and cholangitis, or infection of the bile duct.
Despite this, Margie remains thankful that he never vomited or defecated blood. She also remains amazed at how strong her little one is.
“He is a happy baby, very strong and active despite of his current condition. He is truly a fighter. That is why we are doing everything we could to save his life and have a lifesaving liver transplant while he is still in stable condition,” she shares.
Her faith helped her and her husband cope with this struggle. “We believe that we will not only overcome it, but will be stronger because of it. We have fought from the very start and will continue to fight to save our son’s life.”
For parents who find themselves in a similar situation, Margie’s advice is to first be open to acceptance. Then, aside from caring for your child, she believes it’s important to spring into action, using whatever resources you have at your disposal to seek help, like social media.
“The key in spreading the word is being genuinely honest, just ask only what you really need,” advises Margie. “Most of all is you have to humble yourself before our God almighty that you cannot endure this journey alone and that you need his guidance and grace so by doing this you are putting your full faith in him and trust that everything will be okay.”
She remains grateful to her family, friends, co-workers, schoolmates, the doctors and all the good Samaritans who have been helping them through this difficult time.
“The support that my family and friends provide gives as a sense of hope and a feeling that we already have won the battle,” she marvels. “We truly appreciate the love and compassion they have for our baby during this difficult time.”
In closing, Margie wants to ask the public’s help to give Jed Allen “a chance to live and to have a healthy and fulfilling life.
He still needs a Liver transplant, which can cost anywhere from 2 to 5 million pesos, to help improve his chances of recovery. Since they are pressed for time, every little bit helps. You may reach Margie at 0921-218-0285 or through her Facebook page.