It’s hard to imagine how someone could go through so much heartache but still remains hopeful. After having lost 6 babies to Autosomal Recessive Polycystic Kidney Disease (ARPKD), fitness instructor Joany Catingco manages to do so and wants to inspire others to do the same by sharing her story.
“I got married when I was 23 years old,” she began, recalling how she was about 4 months pregnant then. “I had to give birth that same year when I was only 7 months along.”
She welcomed her first baby, Maria Francesca Louise, in December 2001 after an emergency C-section.
“Everything happened so fast. We were so happy to have a baby. But, after I gave birth, my husband (Jhong) told me that the doctors were doing their best to revive my baby,” she recounted to theAsianparent Philippines.
“I was really shocked because we were healthy, and I was religiously doing what the doctors said, even that time life was so hard.”
On Christmas Day, her husband told her the sad news that they had lost their firstborn baby girl…
On Christmas day, her husband told her the sad news that they had lost their firstborn baby girl. According to Joany, their little one’s cause of death was initially identified as sepsis. This was before they found out about the rare disorder, Autosomal Recessive Polycystic Kidney Disease (ARPKD), that was going to snatch their precious babies from them in the years to come.
“It hurt so bad that I couldn’t even hear babies crying,” confided Joany.
Six years later, in 2007, they welcomed their son Sean Matthew. In the months leading up to the birth, they prepared everything, ensuring a healthy pregnancy and easy delivery. But in the 7th month of her pregnancy, their doctor told her that she needed to be admitted.
“I really didn’t know what was happening,” she recalls, adding how her husband couldn’t be by her side because he was working abroad as a seafarer at the time.
She received tragic news with her mom, dad, and siblings by her side.
“The doctor dropped the bomb and asked my parents and me that I have to choose whether to terminate my pregnancy at 7 months or wait for the due date, but there will be no chance of survival,” she lamented, recalling how she was in shock, trying to compose herself. Her initial reaction was to see her pregnancy through. So she did.
“The doctor dropped the bomb and asked my parents and me, that I have to choose whether to terminate my pregnancy at 7 months or wait for the due date, but there will be no chance of survival…”
Sean Mathew, their second baby (photo courtesy of Joany Catingco)
“At that time, the only thing that the doctor could say was that there’s nothing they can do about it,” she continued, “but they assured me that they would do everything they can for my baby and for me.”
For the remaining two months, she did everything to help improve her baby’s chances. She would undergo treatment to increase her amniotic fluid; she also found strength in her faith.
“At that time, I knew that my baby and I could do it; every day, I’d talk to him while he is moving inside me, asking him to stay with me.”
Her husband flew back home to be by her side during the C-section.
Hours after the procedure, as Joany was recovering from the pain, she suffered another blow, as medical staff wheeled her into the NICU (neonatal intensive care unit) to say goodbye to her baby boy, who was in critical condition.
“I can’t forget that scene. As they opened the door, I saw my child lifeless; I held my child, hugged him crying, and didn’t think of myself being newly operated on. Everyone was quiet, including the nurses, my doctors, my parents, and my husband; it was just my voice, my wailing,” she recalls the painful scene. “At that time, all I can remember is we were all crying. I had to let go because my baby was turning violet. I didn’t care anymore if I would die that time; it was just so painful.”
“After that incident, I had to be strong and move forward,” she shared, recounting how doctors decided to do DNA testing on their deceased child and on both her and her husband. They diagnosed their baby with Autosomal Recessive Polycystic Kidney Disease (ARPKD) through this test.
The rare condition, which affects the kidneys and liver, happens to 1 in 55,000 pregnancies. In Joany’s case, her babies showed no symptoms until the 7th month of pregnancy, during which their amniotic fluid levels were low. To put it simply, their baby couldn’t expel or process the fluid that was supposed to nourish him because of undeveloped kidneys.
“They said that my husband and I were carriers of the disease, even though we didn’t have any symptoms, and we passed this on to our baby that resulted in undeveloped kidneys,” she confided.
Joany got pregnant again a few years later but lost the baby after only 4 months.
“They said that my husband and I were carriers of the disease, even though we didn’t have any symptoms and we passed this on to our baby…”
Zachary John, their third baby (photo courtesy of Joany Catingco)
In 2010, she found out she was pregnant for the fourth time.
This time around, Joany decided to go to a speciality hospital, disclosing everything to their doctor but still believing that this pregnancy would end happily.
Sadly, during her 7th month of pregnancy, she was told the same sad news. She gave birth to her son Zachary John in October 2010 but lost him after 24 hours.
In between these four pregnancies, she suffered two undocumented miscarriages.
“I never asked for anything; I just want my child to be alive when I have to bring him out in this world, be baptized, and be a Christian. I thought I already accepted our fate, but when that day came, it was hard, all the pain was there, again, even worse than ever,” shared a distraught Joany as recalling it all made her emotional.
As of this writing, there is no known cure for the rare condition that has robbed Joany and Jhong of the privilege of becoming parents.
Through her struggles to have a healthy pregnancy, Joany admits to blaming herself at one point.
“I was so guilty that I thought it’s my fault that I did not take care of my babies while they were inside me,” she confided, adding that it was a shock since she always thought she and her husband were healthy individuals.
“My husband has always been so supportive. After all these trials, he let me do what I want,” she gushed, crediting him for supporting her pursuit of being a fitness instructor.
Though she lost six children, she is still holding on to the hope that she will be a mum one day. But she is also willing to accept it if it’s just not meant to be.
“I always wanted to have kids, but if God has bigger plans for me, so be it. I never lose faith, and I believe that everything happens for a reason. I used to plan my future, our future, but sometimes my plan is not God’s plan for me,” she shared. “Maybe telling my story might open some doors.”
“I always wanted to have kids, but if god has bigger plans for me, so be it. I never lose faith and I believe that everything happens for a reason…”
Joany and Jhong Catingco (photo courtesy of Joany Catingco)
Though her experience was painful, Joany tries to help those who find themselves in a similar situation by reaching out on social media.
“Whenever I’m reading stories of grief or loss from social media or meet a friend who suffered the loss of a child, I always say they can all talk to me if they are ready. I usually tell my story, and I know in a way they feel lighter,” she said.
“Losing a child is very painful, and it’s so painful that it causes you to blame yourself,” she says, adding how she chose to think the babies she lost are now in heaven, healthy and free from suffering.
She believes that the grieving process truly starts with denial before acceptance.
“There’s no one who can help me heal but myself. It was a state of mind,” she adds. She also enrolled herself in a gym and attended group exercises. “I surrounded myself with happy people.”
“If you feel like crying, cry. But after crying get up and be the best version of yourself. No one will heal you except yourself, be an inspiration to others.”
Telling her story of losing 6 babies to Autosomal Recessive Polycystic Kidney Disease (ARPKD) also offered much comfort.
“What I discovered was, once you tell your story with whom you are comfortable or even to a random person, the pain will become less and less,” said Joany.
As she told her story, again and again, she cried less and less. She kept suggesting that she was healed.
But being healed does not mean she’s no longer affected. Each year, she shares, she remembers them on their birthdays, and at Christmas, she remembers losing their first baby.
“Losing someone is like losing half of yourself. Yes, we are all broken and can never be whole again, but there are still people around you who are willing to support, love and care about you.”
“Accepting takes time, tell your story, help others,” reassures Joany. “Love yourself, love others, love what you do, live your life. If you feel like crying, cry. But after crying, get up and be the best version of yourself. No one will heal you except yourself, be an inspiration to others. We all have problems, and we all are facing different hardships, but who knows, you might help someone while you heal yourself in the process.”
This article written by Bianchi Mendoza was first published on the theAsianparent Philippines and was edited and republished with permission.
What is Autosomal Recessive Polycystic Kidney Disease (ARPKD)?
Autosomal Recessive Polycystic Kidney Disease (ARPKD) is a rare genetic disorder that affects the kidneys and can cause serious health issues. It is estimated that ARPKD occurs in 1 in 20,000 live births and is responsible for 5-10% of pediatric kidney failure cases.
This disease is caused by a mutation in the PKHD1 gene, which is responsible for the formation of a protein that helps with kidney development. When this protein is defective or missing, it leads to the formation of fluid-filled sacs, called cysts, in the kidneys.
These cysts can grow and damage the kidney tissue, leading to kidney failure. ARPKD can also cause complications in other organs such as the liver, lungs, and pancreas.
It is a lifelong condition that requires careful management and treatment to prevent serious health consequences.
Symptoms and complications associated with ARPKD
Individuals with ARPKD may experience a range of symptoms and complications that can impact their overall health and well-being.
These can include but are not limited to, kidney-related symptoms such as decreased kidney function, kidney stones, and recurrent urinary tract infections.
Additionally, liver involvement is common in ARPKD, with liver fibrosis and enlargement being potential complications. This can lead to portal hypertension and its associated complications, including varices and ascites.
Respiratory difficulties, such as rapid breathing and shortness of breath, may also occur due to the compression of the lungs by enlarged kidneys or the presence of lung cysts. High blood pressure is a prevalent complication in ARPKD, often requiring close monitoring and management.
Furthermore, affected individuals may experience complications related to the cardiovascular system, including heart valve abnormalities and an increased risk of cardiovascular disease.
Given the complex nature of ARPKD, ongoing medical care and multidisciplinary management are essential in addressing and minimising these symptoms and complications, aiming to improve the quality of life of those living with this condition.
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