Celebrating a Mother’s Love – Caring for Her 6-year-old with a Rare Medical Condition

Receiving news that her baby girl was born with non-functioning kidneys was a big blow to Wei Yee. What followed were years of meticulous care for her daughter and fine [...]

When Hannah Phoa was born six years ago, her mother Ms Leong Wei Yee recalled the anxiety that ensued when the new-born had to stay in the hospital due to a rare medical condition. It was an emotionally challenging time for the first-time parents as they grapple with the many uncertainties.

It was also right about that time when other family and friends also shared news about their new-born babies. What was to be a joyous occasion left the 37-year-old research associate feeling even more alone: “While many of them were genuinely concerned, I find it very difficult to talk about the circumstances surrounding us at that point. I feel that no one could fully understand what we were going through and I guess I don’t expect them to.”

“During that period, I think I shut myself out from many of our close friends and family. Thankfully, we are still friends up to this day and we are so grateful for that.”

A lady and her daughter smiling for the camera

Diagnosed with Denys-Drash syndrome, Hannah was born with non-functioning kidneys. Having to be hooked onto the dialysis machine for 10 to 14 hours every day since she was two weeks old was not an easy feat for the 6-year-old. Her parents had to keep her dialysis exit site free from infection by changing the dressing daily. Hannah also had to be fed through a tube, which made it a challenge when she attends pre-school or have to go outdoors for long hours.

But things changed for the better after Hannah’s kidney transplant last year.

“Now that she is transplanted and older, it is easier as she can verbalise her discomfort. We also do not have to rely on dialysis anymore. There are still some challenges such as making sure she [gets sufficient fluid intake], helping her cope with frequent blood tests and reducing her exposure to infection as much as possible. The COVID-19 pandemic actually makes it more challenging as she is considered part of the high-risk group. Nevertheless, we are happy and thankful with the progress that she has made,” shared Wei Yee.

Social Support is Key

Juggling between different commitments and caring for a child with special needs is undoubtedly not a ride in the park. To better balance work and Hannah’s medical appointments, stepping down from her full-time job to a part-time one was a decision Wei Yee had to make.

But she is not alone in her parenting journey. Blessed with an understanding employer and supportive family, Wei Yee appreciates the important role that each of them played in making her journey an easier one.

She said: “It takes a village to raise a kid, but for a child with special needs, it probably needs a community. We have been very blessed with some of the best support system. Having the opportunity to access early intervention for her has also greatly helped her in overcoming some of her developmental delays.”

Hannah has since graduated from SPD@Bedok last year, where she received therapy and educational support through the Early Intervention Programme for Infants and Children (EIPIC).

Seeking out other parents of children with similar condition has also helped Wei Yee manage her situation: “It feels as if there are finally people who understand what you are saying even without saying it. I think the most important part was probably knowing that they have gone through it. And that provided hope to look beyond our current circumstances and reduced our anxiety about the uncertainties.”

Parents, Don’t Be Too Hard on Yourself

One tip that Wei Yee uses to minimise caregiver fatigue is to not take the parenting journey too seriously sometimes. 

“Many times, we tend to blame ourselves or those close to us when things don’t work out. But someone mentioned before that parenting is not like a math equation. Even if we follow all the rules, it does not mean that our children will turn out the way like an answer to a math formula. Being able to take it easy sometimes could reduce the friction and fatigue of being a caregiver.”

Even while parenting, Wei Yee acknowledges that she may have overdone the “helicopter-parenting mode” without realising that Hannah is learning and wanting to show that she could do certain things by herself.

She recalled: “When Hannah’s younger brother was born, I can see that she was trying to fill her role as a big sister. There was this day when her younger brother was crying in the Moses basket (bassinet), and I was busy elsewhere, she picked up a pacifier and try to put it in his mouth to calm him down though she could not really reach him. I thought that was a very sweet and touching moment, but it also made me realise that perhaps it is time I give her the opportunities to be more independent.”

As a mother, she hopes that society can also continue to give Hannah and other children with special needs a chance and not define them based on their limitations.

“Given the right support and resources, many of these children can thrive and be empowered to face life challenges. They too like all other children, like to be respected and listened to. [I also encourage all] to be kinder and less judgemental when you meet parents or caregivers of children with special needs,” she said.

Photo credit: Wei Yee