Nadine Tay was diagnosed with epilepsy when she was eight. Last November, her parents, Pastor Edmund Tay and his wife Lu Jiahui, were faced with the decision to let her go through a brain surgery. Jiahui shares their journey with City News.
I remember it was a rather quick decision: the neurologist spoke to us, standing in the ward corridor, explaining what he had found and what his highly recommended treatment plan was.
Ed and I turned to each other. With one look, I knew we both felt it would be a yes to the doctor’s proposal: a surgery to remove the damaged part of Nadine’s brain.
This was November 2019. Nadine, our youngest child, was warded in KK Women’s and Children’s Hospital to be checked for the frequency of her epileptic seizures. You see, she was diagnosed with epilepsy when she was 8 years old.
DISCOVERY OF EPILEPSY
Nadine started having seizures when she was in Primary 2. We learned later that she had polymicrogyria (literally, many small folds) in her brain. From her MRI scan, you can see the extra folds in the right hemisphere. In layman’s terms, these folds fire out unnatural amount of electric currents in the brain that cause various forms of seizures.
During these seizures, she can stare into space, freeze and stop movement, or drop and convulse involuntarily. With each seizure, the part of the brain that fired the electric currents gets a bit more damaged.
Through the years, medication helped control the seizures. She went to regular school, learned and played like her peers. There were restrictions though: she was not allowed to be alone at any time, definitely not crossing the road or rock climbing or high elements activities. The doctor was concerned that if a seizure happens, she would be risking her life.
It always affected me how she needs to be closely supervised. I remember it reached a point when we couldn’t leave her alone at home for even an hour, or when we can’t send her down to pick up the mail from the mailbox downstairs alone.
I stopped asking God why, because there simply wasn’t a reason why. And I learned that the more I dwelled on the whys, the more I would start blaming myself for something I did or something I ate during pregnancy that could have caused that malformation of her brain.
But God’s Word in Psalm 139:13-14 says, “For You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvellous are Your works, and that my soul knows very well”. This was and still is a verse I hold on to for Nadine. She is fearfully and wonderfully made, and she is just as marvellously created as you and I.
THE NEED FOR SURGERY
In 2019, Nadine started getting seizures more often. It went from occurring once every quarter, to once a month, and eventually, we noticed seizures daily. By mid 2019, she was already near the maximum dosage for the medication. (I’m not even going into the side effects of the meds like drowsiness, irritability, increased appetite and memory loss) The doctor was concerned about the increased frequency—he could not load her with more meds.
Hence the hospital stay where the doctor put her on a 24/7 Electroencephalography (EEG) test to record all the electrical activity in the brain. Simply put, the EEG recorded all instances of seizures in the brain. The results of that EEG that shocked all of us: they found out that Nadine was having seizures nearly every hour! Some were a few seconds long, and some lasted longer. They happened so often and so quickly that it was not possible to notice it with the naked eye.
The doctor told us she was having way too many seizures, and proposed that Nadine undergo surgery to remove the entire portion of her brain that has polymicrogyria. With that, they hoped she would be seizure-free. And while they could not fully guarantee that all the seizures would stop, she would definitely experience few incidences.
The doctor explained that if she didn’t have the surgery, Nadine would continue to have seizures, and the part of the brain that is causing the seizures would eventually lose its function, and the electric currents would start to trigger normal parts of the brain as well.
We made our initial decision standing along that corridor. Thereafter, we spoke to some doctor friends we had, discussed with our parents and close friends. And we prayed.
It was a very clear answer from everyone: Go ahead. We were confident God was in control, He still had and has the best plans for her, He still wants to give her a hope and a future. This surgery may change our plans a little, but we knew it would definitely work out.
(The biggest change to her life would be that she would not take her PSLE this year, but in 2021—which would be a brand new method of assessment. Now that was a big hiccup, but we decided to worry about it another day.)
GEARING UP FOR SURGERY
The decision was made in November 2019 that Nadine would have the surgery. In January, she was in and out of the hospital for various tests. One important test she went through was to identify what “responsibilities” the damaged part of her brain has.
The textbook answer was the “damaged parts” controlled her left motor functions. But because of her seizures, her brain has redeployed these responsibilities to other parts of the brain. Thus, the doctors had to ascertain which of her functions would be affected after the surgery.
Assuming the surgery went well, her left field of vision would likely be affected, and she may lose some of her left fine motor skills. The usual risks were also laid before us: paralysis and surgery complications.
At this point, I remember thinking, my God is a God of miracles. Even if my daughter loses her left field vision, or her left fine motor skills, the miracle is in the seizure free life. To me, losing the above was a small problem. I was confident God restores and Nadine would be okay.
I don’t think this was a case of blind faith, but a real faith knowing that God is in control. I know that I know that I know that I know that God heals and these post-surgery effects would be something that God turns around for Nadine’s good.
The surgeon was unable to estimate the duration of the surgery. It would be at least six hours, but he refused to commit. God made us all so unique: every brain is special and different. It is not the same as giving a deadline for how long you would take to debone a fish.
The doctor gave us a straightforward prognosis after surgery: Nadine would spend two to three days in ICU, then another three days in the High Dependency Ward; thereafter, just another four days in the regular ward and she would be able to go home. And possibly after a month, she could go back to school. That didn’t sound too bad to us. The doctor would work out the schedule, and the surgery would be sometime in May or June.
THEN THERE WAS COVID
Before we knew it, everything had changed. By the end of February, the COVID situation in Singapore was getting serious. We were in DORSCON Orange and the doctor was concerned. On hindsight, I think the doctors all knew there would be the possibility of a full lockdown and that it would affect their patients!
On 28 Feb, I received a phone call. Nadine’s surgery date had been brought forward because of COVID. It would now be on 11 March. My baby would be going through through a brain operation in less than two weeks.
Some asked if I was afraid, if I had any worries of the operation going wrong, if I doubted my decision… Well, I’m a mommy! Of course, all these thoughts crossed my mind.
I took a lot of photos of Nadine in the two weeks leading up to the surgery. We brought the whole family out for meals, brought her to her favorite places and more. Subconsciously, I wanted to wrap up her whole life in those two weeks, just in case she wouldn’t get to experience it again; just in case we couldn’t do life with her again. I busied myself with informing her school, her tutors, family and friends. It was a very busy two weeks!
On 11 Mar 2020, at 8am, we were all seated outside the operating theatre. We prayed, took a picture, hugged and assured her. She was quite irritable that morning. It was too early, and she felt there was too much fuss happening around her.
When they brought her into the theatre, I was allowed to go in with her to settle her in. It was my first time seeing the bright lights and sterile environment. Honestly, I was very tempted to take my phone out and snap pictures!
This was the moment when I felt “Uh-oh, this is it.” The anaesthetist told me to keep talking to her as they administered the general anesthetic. There was so much I wanted to tell Nadine. Suddenly, I realised this could be my last time talking to her, this could be her last time hearing my voice while conscious. I held her hand, I chatted nonsensically about the machines and lights…and in three seconds, she was knocked out.
The doctor said, “Okay Mommy, you need to go.” They had to peel me away from Nadine. I was in tears then. I kissed her cheek, whispered the 829th I love you, and walked out. Was I scared? Not really. Worried? Not really. But I felt sad. The thought that ran through my mind was, that was possibly my last goodbye to Nadine.
I went back out to the waiting area. Ed gave me a hug, and said, “Quick, we need to go. The guys are coming.” We had to rush home, the prayer meeting with our zone leaders was about to start. (See the difference between the ultra practical man and the emotional woman?)
At our home, a few of our zone’s cell group leaders had gathered. We started to worship and pray, pray and worship, worship and pray. It was a wonderful time of just soaking in God’s presence, interceding for Nadine’s healing, and just being assured that God is in control. Throughout the day, the zone leaders took turns to come to our home to pray. Outside, we had other prayer warriors. There were other prayer meetings going on for Nadine. Our family, their church members and our own cell group members and friends prayed with us.
After four and a half hours, we received the first update: the surgery was going well at the halfway mark. The prayer meeting went on, and after another three hours, the doctor requested to meet me. There was some big decision I needed to make.
I was not sure what to think. I asked “Is she okay?” And they said, “Yes, don’t worry. Just come now.” I flew back to the hospital, and waited outside the theatre. Ed stayed on at home to pray. We had zero idea what this decision was about.
It turned out that the surgeon had found a new area in the brain that caused seizures, but it was buried deep. I had to make a decision to let him to remove that part. The possible consequences included loss of gross motor skills in her left hand (not just fine motor skills). But if it wasn’t removed, the seizures would still continue.
I called Ed, we spoke for less than a minute. The answer was clear: Go ahead and remove it. Our goal for this surgery was that Nadine would be seizure-free. We continued to trust God was still in control.
And so the surgery went on. And on. And finally, after another three hours, it was over, and we could see her at the Intensive Care Unit.
The 10-hour prayer meeting ended. We were so grateful for all the prayer warriors who stood in the gap with us. Besides those who prayed, there were those who dropped by the hospital to be with me, and there were our pastors who called us regularly throughout the day to get live updates. This was love in action. We knew we couldn’t have gone through the day without all their love and support.
The doctors told us to go home and rest. We could come back the next day and she would be awake then. By the time we got home it was nearly 1am.
That night at home, Ed and I cried out before the Lord at home. In our spirits, we knew the battle had just begun. There was nothing else we could do but to pray. We believed that she will awake and be healed. We were reminded of this verse in Genesis 28:15, “What’s more, I am with you, and I will protect you wherever you go…I will not leave you until I have finished giving you everything I have promised you.”
It was a clear promise from God. He will finish giving everything He has promised us. And with that assurance, we went to bed.
ALL IN HIS TIME
Well, Nadine didn’t wake up the next day. Nor the following day. We remembered the doctor’s words: “After the surgery, she would spend two to three days in ICU, then the High Dependency Ward, then the general ward…”
She was not even waking up! How on earth was she going to leave the ICU? Oh, how we prayed in the days following the op! Everyone was calling out, “Talitha Cumi” (Little girl, arise!).
Nadine continued sleeping, unresponsive to our calls and hand-squeezing. We whispered prayers to her, played worship songs on the iPad, and replayed many recorded prayers by various ones to her.
What were we thinking when Nadine didn’t wake up? While we really wanted her to open her eyes, we felt she was in God’s presence, having a great time with Him. We were confident that she would wake up when it was time. Just like someone who’s just had surgery in the foot would need time to rest that foot, Nadine just had brain surgery and her brain needed time to rest.
On Day 5, she suddenly woke up, and uttered her first words, “I want soy bean!” We were so thankful and were smiling and praising God the whole day!
At that point, we thought “Yay, everything will be okay now!” Alas, there was so much more that Nadine had to relearn. Eventually she left the ICU, then the High Dependency, and finally she was placed in the regular ward. She had to learn how to walk straight, balance herself, climb steps and turn around. She struggled to hold a spoon, and even to lift her finger to her nose. But God is so, so good! She received intensive physiotherapy and occupational therapy (once a day, every day!)
Eventually, she was moving around confidently (with assistance) and the doctors told us that she could discharged. On 6 April, Nadine came home.
I wish we could say everything was back to normal when she came home. It was not. We occasionally forgot her left hand had little strength, and she broke at least three bowls during meal times. She needed help to shower, brush teeth, change her clothes and even to walk to her room. (She would walk straight into the wall because of her affected left vision field.)
But we were thankful for the Circuit Breaker! We didn’t expect it to start on 7 April; that meant Nadine had all of our attention at home. What a glorious, uninterrupted time together as a family to take care of her! Each of us had time to work, time to ourselves and, of course, time to be with Nadine.
REJOICING & REFLECTIONS
Did things get easier? Yes and no. There was plenty to thank God for, plenty to rejoice over. The biggest testimony now is she has been seizure-free since the surgery!
But we also found out new struggles she faced. The prayer list became longer. I think I became a Post-It reminder note to God. I kept praying and reminding Him of His promises for her. I reminded Him of the promises He made and showed Him what she was struggling with and told Him, “Fix It! God, please fix it!”
It is December now. Nadine is a testimony of God’s goodness and faithfulness. Imagine: she’s had a major brain operation and she was, up till the year end school holidays, going to school and going about her daily lifestyle as she normally did. God has been so faithful—He made little things right in His time.
Is she totally and completely healed? Not yet. There are still miracles we are believing for: that her left fine motor skills would return to pre-surgery state, and that her left field of vision would be completely restored. We recently discovered that her ability to process words and communicate them seems to be affected. So while we celebrate and praise God for all that He has done, we know that she is still a work in progress.
Do we regret making the decision to go for the surgery? Absolutely no. Medically, it was necessary for Nadine. Spiritually, it was life-changing for our entire family. We have a revelation that God’s healing is for all—no one exempted and no one denied. We know what it means when Solomon declared that “everything is beautiful in His time”, even in the midst of COVID-19. We experienced God’s mercies which are truly new every morning.
Please keep praying with us for a complete miracle. We have seen the power of prayer and know that God is continuing to work in Nadine’s life.