Protecting This Child

Shared Experience28th March 202021st August 2020

Being first time parents, we didn’t know what to expect from and during and from a pregnancy. Every pregnancy is different. Even with the knowledge we’ve gained on hand, there’s nothing to say that we’d be 100% ready if we are blessed with another child.

As with most couples who are expecting, whenever we were dealt any troubling news, our first port of call was to resort to a simple google search online (which often brought up complex medical terms and potential complications, hence adding more worry to our already furrowed brows). Alternatively, we would browse through various YouTube videos, desperately searching for comfort in others who had gone through similar experiences, and telling ourselves that everything would work out fine. Though we hoped that this would bring some measure of comfort to us, any comfort felt was at best minimal. Nothing could beat the fear of the unknown and the uneasiness that came with the waiting.

This post recaps possibly one of the toughest moments that we faced in our pregnancy with Ruth. We know firsthand that an open sharing about our difficulties has its place in this community, and that there is value in putting our experience out in the open so that others may benefit from our learning points. But really, our main purpose is to encourage those who may also be on the same path. To see that there is joy in the pain, and thanksgiving in the sorrow. More importantly, you are not alone. There is a community here who cares for you and would like to bear your burden together with you.

As a disclaimer, Marc and I are not medical professionals and we do not have the authority to dispense out any medical advice. All opinions stated herein are purely our own and the interpretation of various medical terms are based on the information that we have received from our gynaecologist, and information that is available online. If you require a second opinion on your pregnancy, please approach your gynaecologist directly and/or seek medical attention from a professional.

A. FINDING OUT ABOUT OUR PREGNANCY

After just over 5 years together, Marc (29 years old) and I (25 years old) got married on 14 December 2019.

Even though we were marrying young (in the context of Singapore’s society), we both knew that we wanted to start a family as soon as we could, and that we weren’t going to wait until a year or two after the wedding before trying for children. The reason for this is simple. We don’t know when God would call us back to His kingdom, and we want to be around for our children as long as we can. Also, as the youngest child of his family (with an age difference of 11 years between his eldest brother and himself), we saw no reason to delay the gifting of another grandchild to Marc’s parents. As for me, both my maternal and paternal grandparents are still alive and well. It would mean the world if I could also give them a great-grandchild before they themselves returned to the Lord.

the first confirmation of pregnancy

On 31 December 2019, we found out that we were pregnant. Given that my periods were very regular and I was due for my next cycle on 31 December 2019, our suspicions were confirmed almost immediately after taking a pregnancy test. Of course, we were elated. We never expected to be so fortunate to conceive so easily and this was definitely the best way to start the new year.

B. SIGNS OF TROUBLE BEFORE OUR FIRST GYNAE VISIT

We arranged to meet with our gynaecologist, Dr Claudia Chi of Astra Women’s Clinic (Paragon), on 10 January 2020. Dr Chi came highly recommended from my cousin as Dr Chi had delivered both her children at NUH before she entered into private practice.

In the morning of my appointment, I began to notice brown spotting on my underwear. Though the blood wasn’t fresh, it was still alarming to see such spotting especially since I was told that any discharge during pregnancy should be clear or milky. That same afternoon, I relayed my concerns to Dr Chi and was prescribed with Duphaston, a pill that would promote the progesterone levels in my system and protect us from a threatened miscarriage. Other than the spotting, our baby’s “egg” sac was in place and things looked good. We had little to worry about.

Coping with bleeding and pain

On 18 January 2020, we decided to make a return trip to Dr Chi as the spotting situation had not improved and really, we just wanted to be safe and get Dr Chi’s opinion on the situation. Whilst there was no pain per se, the spotting would be dark brown at times. On 18 January 2020, Dr Chi increased the dosage of Duphaston that I was to take daily. Instead of 2 pills a day, the frequency of the pill became 3 times a day. In view that the bleeding had not improved, Dr Chi also gave me a week’s worth of hospitalisation leave just to steer clear from work and have some rest. Personally, we observed that the bleeding would decrease whenever I slept / lay horizontally on the bed or the sofa. We suspect that this is likely due to the effect of gravity.

On 20 January 2020, the workaholic in me decided to heed Dr Chi’s advice to stay at home and rest. At 1:20pm on the same day, I began to experience severe contractions in the upper abdomen, that came in cycles of 1.5 minutes (1 minute of pain, followed by half a minute of rest). These “contractions” continued for a good thirty minutes. Despite priding myself on having a rather high pain tolerance, I broke down in tears and simply could not move. This was the most amount of pain that I have ever felt in my life. My parents then rushed me down to Dr Chi’s clinic to make sure that the foetus was not in distress and that things were alright. Likewise, Marc left office in a rush on urgent leave and met me at the clinic.

At the clinic, Dr Chi did a brief check on the baby and the baby appeared to be unaffected by the pain. She suspected that the pain was more likely due to gastric rather than any pregnancy issue(s). I was prescribed a pregnancy-safe medication to help me cope with gastric acid during the pregnancy and continued to be on bed rest for the remainder of my hospitalisation leave. We took things easy for that week and sure enough, the bleeding did stop after a couple of weeks of being on Duphaston. That being said, the side effects that Duphaston gave me were extreme nausea, tiredness and a loss of appetite. Due to the aforesaid side effects and stress from work, as of earlier this week (16 weeks into the pregnancy), I’ve only put on about 1kg due to weight loss in the 1st trimester (although my stomach has grown considerably larger).

C. THE POSITIVE OSCAR’S TEST – 1:18 vs. 1:922

On 29 February 2020, we went ahead with the OSCAR test and in-depth scan to test for our baby’s nuchal translucency. Our scan with our sonographer went smoothly. Our baby’s limbs and organs were well-formed and she was able to clearly identify our baby’s nasal bone. Our baby was also incredibly active during the entire scan and kept playing hard to get!

After the detailed scan, we moved onto do the blood test (without much clue about the results that would yield from the same). Thereafter, we brought back the findings from our sonographer to our gynaecologist for further discussion. Then, our gynaecologist informed us that the nuchal translucency reading (i.e. the measurement of the spinal fluid in the baby’s neck) was above the 95th percentile. Our reading was 3.1mm whereas the 95th percentile’s reading was 2.5mm. Given our background risk (as we were young) and we had no family history of Down’s Syndrome, our gynaecologist reassured us that there was nothing to worry about and that we should just wait for the OSCAR test’s results before thinking about the next step.

To explain, we understand that the nuchal translucency measurement is an indication of a chromosomal abnormality in the baby. The higher the measurement, the higher the probability that the foetus will be affected by a chromosomal abnormality such as Down’s Syndrome (Trisomy 21), Edwards Syndrome (Trisomy 18) or Patau Syndrome (Trisomy 13).

On 3 March 2020 at approximately 12pm, I received a call from the nurse from our gynaecologist’s clinic. She asked us for our availability to attend at our gynaecologist’s clinic on 4 March 2020 on an urgent basis. Partly in disbelief, I asked her jokingly, “Oh, the test results are bad ah?” to which the nurse responded inconclusively with a “Mmm… ya.” At first, the gravity of her words didn’t sink in. I then fixed an appointment with our gynaecologist the following morning.

It took me a good 15 minutes to process the news. So did Marc. I lay on our bed just mulling over the conversation and gradually accepting the fact that the clinic would not have called unless there was a need to conduct further testing. This only meant that the OSCAR test results were not positive and that there was now cause for worry.

Image Credits: Pixabay

First, my mind then jumped to the thought: “Would we still keep this child if the child had special needs?” Given that Marc and I had just resigned from our jobs (without securing a new position especially in this covid situation), “Could we take care of this baby? Are we financially able to take care of this baby?” I immediately felt guilt about even having these thoughts. Being a Christian, I know that God entrusted this life to Marc and I and that we were responsible for protecting this life that belongs to Him. How then, could I even contemplate the possibility of terminating this pregnancy when it was not even the case that our baby suffered from a physical deformity / serious physiological condition? In any case, Down’s Syndrome was not a disease / life-threatening condition. It was only an impairment and our child would be healthy otherwise.

Then, I panicked. Even if we kept this baby, does Singapore have any support groups/systems that our baby could benefit from? Would we be ready to bring our child out in public on a regular basis in a society that has yet to be fully-inclusive of children with special needs? Let’s face it. We live in a conservative society and it is rare to see parents bring out their special needs children into the public eye. Even if they do, they have to then deal with nosy / insensitive individuals who may pass comments about how their child looks / behaves. Were we ready for that as new parents? Were our families ready to embrace this new reality? The idea of caring for a child (as new parents) is mind-boggling enough. Taking care of a special needs child is an entirely different story, were we prepared to take on this challenge? Would we be able to lift our heads high when any of our extended family members compare our child with their own?

I also thought about how we would be able to balance caregiving for a special needs child with other children that we may have in the future. How would we foster an environment of love and care such that our other children do not look at their special needs sibling with hate or disdain, but love, kindness and acceptance? How do we balance caring for our children such that there is no room for any comparison? And, after Marc and I leave this world, would our other children be ready to take over caring for their special needs sibling? Could we expect them to carry this burden for us when they had their own families? Was it fair to expect them to do so?

But at the end of the day, the main source of my guilt lay in the fact that I was not even able to protect this child (if the child has special needs) before it entered into this world. I struggled to contemplate how this child could be predestined for suffering in this world (and a different life) without even being given a fighting chance. When we took a drive out to grab lunch, I looked at all the people standing on the streets going about their daily lives. How was it that all of these individuals were blessed to be born from normal pregnancies and live a regular life, but my child may be subject to a different lifestyle and path from them? How was that fair, and how could this happen to my innocent child who did nothing to deserve this?

Marc and I then agreed that it was possible that we were over-thinking things. There were mothers online who were panicking with a result of 1:123. To us, that was a result that we could accept (0.08%). If those were our odds, we were prepared to take those odds on.

Image Credits: Pixabay

On 4 March 2020, we took the Harmony Test because of our positive OSCAR test results.

My mother was overseas at this point. We updated Marc’s parents about the call from the gynaecologist’s clinic on 3 March 2020. They immediately made arrangements to be there with us on 4 March 2020 to receive the results. We are immensely blessed by their presence and support.

When we visited Dr Chi, Dr Chi showed us the results of the OSCAR test. Our background risk was 1:922, but our results were 1:18 (5%; 500 times of our background risk). The reason for this was due to the “abnormal” nuchal translucency measurement and the fact that the measurement of the PAPP-A hormone in my blood was 1.48 when the range for a 12-week pregnancy should have been above a reading of 6. I also blamed myself for the low hormone reading as this was a measurement that was obtained directly from my blood. I wrestled with the thought of whether I omitted to do something / did something wrong which resulted in this measurement. Was this something within my control and if it was, why did I not take more care?

As we were expecting an odds of 1:triple figure, this reveal brought me to tears and I recall Marc’s face going white. In light that the false positive rate of an OSCAR test was 1 out of 20 (5%), could it be that our OSCAR test results were accurate? What would be the chances that our baby would fall into the 17 out of 18 babies who were healthy and why on earth were we given these odds despite our background risk?

To cut the long story short, we decided to go ahead with the Harmony test (the NIPT) (the more expensive test) which would look into our baby’s DNA and the chromosomes therein. This test had a false positive rate of 1 out of 1,600 and it would give us a more accurate assessment of whether the baby had special needs or not. We also agreed that if the Harmony test’s results were not favourable, we would proceed to do Amniocentesis i.e. a prenatal test which extracts a small amount of amniotic fluid from the sac around our baby for testing. Although this was accompanied by a tiny risk of miscarriage, this would be the best and final confirmation about whether our child had special needs or not. We were also told that the lab would take between 10 to 14 days to churn out the results. It was going to be a difficult and long wait.

When they drew my blood for the test, I broke down again from just watching the blood being drawn from my vein. All I could think of in my head was that this was it. This was the test that would more or less give us a 99% indication of whether our child would have special needs or not. I walked out of the test weeping (whilst receiving several concerned stares as I was obviously pregnant and crying by myself), and kept crying until I reached Marc at the end of the corridor.

We then headed down to meet Marc’s parents to share with them the findings and I broke down yet again. I could not help but feel that I had disappointed his parents with the OSCAR test results and had done nothing but burden them as a daughter-in-law. But, I am blessed. When my mother reached out to thank Marc’s mother for being there for us during this trying period, Marc’s mother responded to say that she sees me as her daughter and was happy to be there for us during this experience. How am I so fortunate to have such kind and loving in-laws? I am truly undeserving and it really is only by God’s grace.

D. LOOKING BACK ON THIS JOURNEY

I think it goes without saying that this was the most distressing period of my entire life. Since the bleeding took place in late January 2020, Marc and I struggled to balance workplace politics whilst ensuring that our work performance was not affected. In addition, the morning sickness was ongoing for most of my days, and I hardly ate. In fact, I found myself growing a pregnant belly with no weight gain. All I could surmise was that the baby was growing and feeding on my “nutrients”, whereas my base self was constantly losing weight.

We received our results on 16 March 2020. By God’s grace, the results gave us a 1:10,000 chance of having a baby with special needs and we found out that we were expecting a little girl.

However, during the week of waiting for our Harmony test’s results, I started to see the beauty of children with special needs, and God kept showing me that He would be there with us every single step of the way if we were indeed destined to have a child with special needs. I was incredibly encouraged by the amount of support that our friends showed us (Alvin, Julee, Catherine, Dillon, Natalie, Eleanor, Li Cheng, Glenda, Shahira, Steph, Niki, Aaron, Nikki), our family (Marc’s parents, my mom and sister, Stacey, my grandfather, my cousin, Irene), my mom’s friends/prayer warriors from BSF. We were also so grateful to have prayer from Pastor Wai Leng and Aunty Mabel from Cornerstone Community Church. Everyone kept assuring us that they were ready to love our child no matter the outcome of the result. God is so good.

God also decided to bring my attention to a giveaway by Upcakes, a local bakery business dedicated to this couple’s son, Andrew, who has Down’s Syndrome, which was giving 21 cakes away in view of World Down Syndrome day on 21 March 2020. They seek to bring about a greater awareness about Down Syndrome in Singapore, with view of creating a society that is more inclusive and accepting of children with Down Syndrome. I then shared about this giveaway with Pastor Wai Leng on Sunday, and then discovered that the founder of Upcakes also belongs to the church! This was incredibly timely and it was God’s reminder that there will always be a community prepared for you, and people to walk with you in the days of sadness and rain, even when you don’t see it.

Lastly, this whole experience also taught me to have a new appreciation for life. To be completely frank, if our OSCAR test was alright, these were thoughts / considerations that would have never crossed my mind, and perhaps, we may have even thrown aside the positive result carelessly without a thought for those who had to deal with a result that was not positive for them. We are so grateful to be able to experience this other side of pregnancy and be alive to the struggles that some couples face so that we can be a pillar of support to those who need such support. Also, I’ve always known that God has called me to serve in the areas of children and animals, but I had yet to figure out how He wished me to serve with children. Now I know that God has called me to serve in the ministry of children with special needs, and to be their advocate and mouthpiece in this society (and the world).

Ruth Jedidah Lee, you are so loved.

from Daddy and Mommy

God has placed so many people in your mommy and daddy’s lives who already bursting with so much love for you. You are our beloved, and our Abba Father’s precious child now and always.

May you always be compassionate and kind, may you be a friend to all. May you chase after God and always be hungry for Him. May you always be rooted in the word of the Lord even when times get difficult, and choose to be right with God than be right in the eyes of men. May you always choose to do what’s right although society demands otherwise, and may you always have a heart for His people no matter their background and situation. May you also have a heart for children with special needs and work together with your parents to create a better world for everyone.

Although your earthly parents are still struggling to be good parents for you, we promise you that we will never stop trying and that we will always love you.

Leave a Reply

Your email address will not be published.