"You can still do a last minute termination of the pregnancy", said the doctor
When a woman becomes a mother, she finds strength that she never knew existed, to fight battles that she never imagined possible. Here is a story of how the face of adversity turned a mother into an unparalleled paragon of hope, strength and love.
A mother’s strength is unparalleled when put to test.
Rita was expecting her second child. Her first child was a beautiful and bubbly toddler, who would soon turn 2. All seemed to be well until one day, when I met her and told her how I excited I was about her pregnancy, her cheerful disposition dissipated and she lowered her gaze.
Yes, if all goes well that is. Hopefully.
I looked at her incredulously. There in front of me was Rita, one of the most optimistic people I’d ever known, speaking with such uncertainty about her pregnancy. It was completely uncharacteristic of her and I immediately sensed that something was wrong.
“I was told that he is measuring two weeks behind,” she said.
I tried to reassure her that it would all be fine and measurements during the ultrasound are never 100% accurate. I reminded her of my experience, and how my gynae was always concerned that my son wasn’t growing enough in utero, but he turned out perfectly healthy.
I knew her smile was forced. A mother’s strength forced that smile and optimism. But as she left that day, I knew that she was far from convinced that everything was ok, because when a mother has a strong gut feeling, she’s usually right.
Indeed, she was right.
When Rita was about 6 months pregnant, she had to be hospitalised for close monitoring. Her baby was still not growing as expected, and her amniotic fluids were low. The doctors could not put their finger on what the anomaly was, and suggested drawing amniotic fluids for further testing.
“You can still do a last minute termination of the pregnancy,” the doctors told her.
Rita was horrified. The only reason she would have done the test would be to better prepare her for what to expect. Terminating the pregnancy was morally untenable for her.
That was precisely why she had not done the OSCAR test. Rita and her husband stood firm that even if their child had an abnormality, they would keep him, at any cost.
She decided against testing, and spent the rest of her pregnancy in and out of the hospital. Her baby’s condition demanded that she rested as much as possible.
As always, a mother’s strength dispels the dismal clouds of doom. Rita fought to remain positive.
Then, to make things worse, the doctors told Rita that there was a cyst in her baby’s brain. They assured her that the cyst was harmless and wouldn’t affect the brain’s growth. But no amount of reassuring could possibly put her troubled heart to ease.
Riddled with questions and burdened with uncertainty, it was faith and a mother’s strength that tided Rita over the rough and rocky road to meeting her son.
When she was 32 weeks pregnant, Rita went for her weekly check up. She had check ups every week due her baby’s condition.
Blood has flowed into his brain. You will lose him if we don’t take him out now.
Upon hearing those chilling words, Rita was taken in for an emergency c-section. And that marked the beginning of some incredibly tough times ahead.
After he was born, her little prince was kept in the incubator for a long period. He required tube feeding. The doctors immediately diagnosed some of the complications – heart murmur, seizures and a cleft palate.
The very next day, doctors approached Rita and her husband and instructed them to undergo DNA tests to determine if either one of them were carrying faulty genes. It would take two weeks of waiting and speculating before they received the results. There’s only so much that a mother’s strength could be tested.
“That was my breaking point. When the doctors told us about the DNA tests, I just started crying uncontrollably. I knew something was wrong, but I thought it was just one of those unfortunate things that had to happen.
We were also still in the dark about what exactly was wrong, and how much of it was because of a premature birth as opposed to an actual genetic disorder.
But to think that it could be because of our genes, or that any future children we have might all be at risk, it was just too much for me to take.”
The diagnosis was good and bad news. The good thing was that it had nothing to do with either parent’s genes. The bad news was that it was an extremely rare genetic disorder that was more common in Western countries.
The days and months that followed were a blur. The little angel had to fight with all that he had to get through multiple surgeries. Hernia and heart ballooning were among the many other surgeries he had.
After almost 3 months in the hospital, the little warrior could finally go home. He had to be on medication and required oral feeding tubes as well as a breathing mask. The mask left the poor baby uncomfortable and caused him to produce a lot of mucus. Thankfully, after some time, Rita weaned him off the mask and he managed fine without it.
But that’s not the end. It’s still a long and arduous road ahead. It is an uphill battle for the entire family. The baby’s condition has stabilised but he still has more surgeries to undergo. Seizures occur occasionally and he is unable to feed independently.
My son is special and he will always be. He is never going to be able to lead a normal life. He weighs significantly less than children his age, he can’t speak, stand or walk. But he’s always special and perfect to us the way he is.
How did she manage her emotions?
At first I was very scared for my child. I wondered how he would fend for himself when we are gone, and how society will perceive him when they discover all that he lacks. I felt so sad for him knowing that his life would never be normal.
The sky is the limit when a mother’s strength is coupled with her husband’s support, love and guidance.
But my strongest pillar of support was my husband. He remained composed and admirably positive through the entire ordeal. When I cried he would ask me why I was crying.
“Our son is a blessing. He is special. Taking care of him and loving him in spite of the challenges, that’s our ticket to heaven. It’s God’s way of ensuring that we enter the gates of heaven together,” he would say.
My husband’s words served as a reminder for me to remain positive. I saw my son as a gift instead of a burden. I started believing that God sent him to us for a reason.
It wasn’t a genetic condition that came from us. Why did this happen to my son of all the children? It must be because God thinks that he is the best for us, the way he is.
How did she cope?
Family support played a cardinal role in Rita’s ability to cope with the situation. Rita is a full time working mum and eventually she had to return to work. Rita chose to stay with her parents.
The entire family came together to help the little one. Her mum would even wake up in the wee hours of the night to take over feeding duties, so that Rita could get her much needed rest.
In this case, it was a grandmother’s, and a mother’s strength coming together.
Her colleagues and bosses were supportive as well. Rita says she’s blessed in that way. Instead of raising eyebrows or passing hurtful comments, they understood her need to take leave frequently. This made it so much easier for her to be present whenever her son needed surgery, or to attend to any emergency.
Her husband too would take over whenever he could. They took turns to take leave from work and attend to their son’s medical needs.
You can imagine the hospital bills to have rocketed. Rita is thankful that she had taken an insurance policy, with riders that provided coverage for her son’s medical bills. The baby bonus and Child Development Account (CDA) given by the government was also of great help.
I can’t afford to leave my job because we need the money, especially so now. Also, going to work helps me to cope. It takes my mind off things a little and keeps me going.
What did she learn from this experience?
I learnt to see the beauty in everything and everyone.
Going through this with my husband strengthened our relationship and made me see the beauty in him. I came to understand just how compassionate and loving he actually is.
I saw all these special qualities that he possessed. I highly doubt that I would have ever come to know of these if life had continuously been smooth sailing for us.
I saw a lot of love and beauty in my family and my in-laws.This journey drew me closer to my in-laws as I saw them in a different light. No one, absolutely no one in the family judged my son for his condition. Everyone loves him and dotes on him.
I can’t deny that I constantly worry about how my son will survive without my husband and me, after we are gone. Yes he has his older sister but someday she will have a life of her own to lead.
My husband reminds me not to think so far. We take one thing at a time. We take his journey one day at a time.
What does she have to say about her son?
You know, there’s something about him. There’s just something about him that makes everyone love him. Anyone who sees him just wants to ‘sayang’ him. He’s so beautiful.
And he’s a really happy baby! He’s cheerful and loving, he’s just so nice! In fact, my daughter is crankier than him. It’s almost like he gives way to his sister. When I place him down to attend to her, he never cries or kicks up a fuss.
I could picture her beautiful smile as she told me this over the phone, in her dulcet voice. I could imagine her big, enticing eyes lighting up as she spoke of her beloved son.
Rita is truly commendable. If you meet her, you would never imagine that she is dealing with so much. Never does she display a hint of anger or bitterness about her son’s condition.
In spite of her own struggles, Rita never hesitates to render her help and support to the people around her. She has oceanic compassion and nothing short of a heart of gold.
If he’s able to travel, I’m going to take him to many, many places. I want to make him so happy that he even forgets that he can’t lead a normal life. My only intent as his parent is to make him happy all his life, however long he’s going to live.
** Names have been changed to protect the identity of the family in this story.