My tragic pregnancy experience in Belgium (2)

Continued from the previous post: My tragic pregnancy experience in Belgium (1)

“It is a boy”.

I could not hold my tears anymore and started crying. I cried not because the baby was not a girl, but from that moment on, I knew more about my baby. I no longer refer to the baby as “it”, but “he”, he is a human to me.

At that moment I didn’t care if the baby was a boy or a girl, I only hoped he was healthy, and I’ll love the hell of him.

The third Ultrasound – week 13

I then moved to the ultrasound bed to get the baby checked, the light was turned off for better screen visualization. Dr. C was very familiar with the process, she checked different parts of the baby, there was a lot of measuring, and heartbeat listening, the room was really quiet and dark, and I could not even dare to breathe loudly. I looked at the images of the baby on the screen, sometimes he even had some happy jumps in me.

My tears continued to run, R held my hand and said “It will be ok”. Dr. C said, “It is amazing that he is so small (only the size of a lime), but can make a mom so stressed”. Along the process, she explained that she was checking the heart, then the kidney, then the stomach, and so on, we even had a count on the fingers and toes.

After 15 minutes, Dr. C said, “I have done a thorough check on the baby, to the extent which usually we do only at week 20, your baby seems very normal. I like your baby”. , she grinned in a relaxed manner and continued “This means most probably it is only the placenta, which we had experienced in the past. But to be 100% sure, it is still recommended to do an amniocentesis.”

That was a real relief. We were all very happy that day. Although the real result would be confirmed in 3 weeks.

What is Trisomy 2?

When we got home, I did some crazy googling on Trisomy 2. Unfortunately, it seems that this disease is so rare, (most probably because NIPT technology was quite recent) that I could not find anybody sharing stories online. The only thing I could find was some medical research papers, it was scary to read. Even a Google image on trisomy 2 would result in disturbing pictures.

Humankind has 23 pairs of chromosomes, each chromosome carries a certain amount of DNA which (via RNA) will instruct the protein on the cell to do its work. Each time a cell is replicated, either during fertilization (meiosis) or subsequent growth (mitosis), the new cell will also receive 23 pairs of chromosomes.
During the cell replication process, an error can occur, causing the replicated cell more (trisomy), or fewer (monosomy) chromosomes than 23 pairs.

Trisomy 2 means that there is the existence of 3 copies of chromosome 2 (instead of 2 copies in a pair) found in the cells. Apparently, any kind of trisomy on the baby will cause some abnormality, physically or neurotically. Some trisomy types are not compatible with life, so they result in the early stages of miscarriages, in fact, approximately 50% of first trimester miscarriages are due to a chromosome abnormality in the fetus.

Some trisomies are compatible with life, such as Down syndrome (trisomy 21), Edwards syndrome (Trisomy 18), and Patau syndrome (trisomy 13), but they cause different levels of diseases in the baby such as low life expectancy, mal-functional organs, learning disability, etc, as a matter of fact, that is why the NIPT test screening is for.

I just hoped that the trisomy 2 was not on the baby, so we could still expect this new life in June, even if he comes out a bit earlier.

Christmas and New Year

The next 2 weeks were dark and long and rainy, we were not able to celebrate due to the unknowns about the baby, and even the best-case scenario meant some complications in the pregnancy. I have never imagined this.

For the 2 weeks of vacation, most of the days I sat on the sofa, lying back, looking at the ceiling, and doing nothing. I wished the time could be faster, I never liked uncertainty in any situation, not to say on such an important matter.

We met some friends, I tried to repeat the story to different people, in the end, I managed to tell it without crying, all my friends were supportive, and we all were convinced that the baby would be without any genetic disorder, or at least, we all hoped.

My original idea of announcing the new life on the Christmas card was completely dismissed from my mind.

Week 15 – Amniocentesis

The amniocentesis procedure was scheduled in UZ Leuven on Monday 10th January at 9:00 am, we first met a professor doctor from the genetics department, she explained to us the scenarios and the process (actually Dr. C already explained before), along with some emotional support. We could still decide to skip the procedure, but both R and I would like to have some reassurance about the baby, so we decided to go forward with the amniocentesis.

We then went to another doctor who is an expert at performing the procedure. After half an hour of waiting, we entered the consultation room, the doctor started to check the baby using an ultrasound. “Hmm the baby is in such a weird position, he is hiding quite down, it is hard to perform the procedure, it is better to come back next Monday”.

“What?!” I was furious as well as amused, furious because I drove 30 minutes, and waited for another 30 minutes, after 1 minute of consultation just to be told to come back again next week; meanwhile, I was also amused because I found it funny that the baby appeared to be stubborn, perhaps he did not want the procedure to be done so he was hiding. I was even imagining, that when he grows up, whenever he appears stubborn, I will tell him, you were like this when you were in my womb!

Week 16 – Amniocentesis

After another week of waiting with despair, we found ourselves in UZ Leuven on a Monday morning again. The baby’s position was still not perfect, but he was able to wake up after a few minutes.

There were 3 female medical staff in the room, one assistant, one doctor who was responsible for the procedure, and one supervisor. The assistant was responsible for setting up the tools next to me and disinfecting my belly, as well as providing some gentle instructions and emotional support to me. R was always by my side. We were explained the procedure would be around only a few minutes, just like getting a vaccination, so no anesthesia was needed.

But after the doctor put her 5 cm needle in my belly guided by ultrasound, she explained it was not that easy to locate the amniotic sac; there was not a lot of fluid, and the baby kept moving, so they had to wait.

The waiting with the needle in me was torture, despite the continuous pain, I was instructed not to breathe too heavily, as it would make the belly move, which would make the procedure more difficult. For more than 10 minutes, during which R held my hand and stroked my hair, and repeated “We are almost there, you are so brave”.

I asked how far were we, the doctor said “The needle is still only in the muscle, we are still locating a place to make sure we don’t puncture the baby”. I was in total despair.

Finally, after around 15 minutes, they were ready to puncture the needle from the uterus to the amniotic sac, it took only one second, then they could draw the fluid rather quickly.

As soon as it was done, I could no longer hold my breath, the pain, the stress, and grievance all came together, and I started crying heavily on the table.

After the procedure, I was led by the assistant to a restroom where I could lie down for half an hour before we went home. It was a big room with some rest beds, separated by curtains. I told R that finally after all the waiting, I did what I could for the baby, the rest was to wait for the result, I hope the result was good. “It will be.” said R firmly.

During the waiting time, one nurse dropped by and asked me how I was doing, it seemed she was briefed about my situation and she showed lots of empathy about me having to come twice for the puncture, and it took longer than expected.

Another professor doctor dropped by later on to ask me if I would like to give my consent for her Ph.D. paper, which was a study on Trisomy 2 on the placenta. Her hypothesis was that trisomy 2 on the placenta would not impact the normal development of the baby, apart from the last stage of providing nutrients, which medically they already had some experiences (with trisomy 16). She would like to get the placenta researched further after the baby’s delivery in June, to positively confirm this.

In 2020, I finished my thesis for my second master’s degree with lots of effort and help from others to gather data, it was a nice exercise. If I can contribute to pushing the boundary of medical knowledge a bit further, so that better treatment can be developed to benefit others, I would love to. I signed the consent form without hesitation.

Amniocentesis result

I took 2 days of sick leave to recover from the procedure, luckily, there were no complications such as amniotic sac breaking, fever, virginal bleeding, etc., so I was able to go back to work as planned. On that Friday, while working, I got a phone call from the hospital, I was nervous, so I told the doctor to wait until I went downstairs to get R to listen to the result together (we were both working from home).

Breath, breath, then the doctor said, as expected, trisomy 2 was not found in the amniotic fluid, which confirmed that the baby’s gene was completely normal.

We thanked the doctor and hugged each other for a long time. It was the first good news for the whole month! We couldn’t wait to share the news with families and friends who knew the situation, everyone was happy.

Week 17 – 19 Calmness and joy

The next 2-3 weeks were amazing, the daylight became longer, the weather was better, still cold but quite sunny, and my belly started popping. Our mood was quite positive since we knew our baby did not have genetic disorders.

At home whenever I needed anything, I put my hands at my waist showed my popped belly to R in a spoiled manner, and said “Baby wants to …”, it always worked like a charm, I was the happiest woman in the world.

I took a walk outside every day, and walked proudly with my popped belly, like I was saying to the whole world, “I am becoming a mom!”

We found ourselves all of a sudden very busy with the preparation for the baby stuff, we got a lot of gifts from friends for the baby and myself, we applied for one of the day-cares near our place, and we finalized the nickname of our little baby. During the weekends, we went to the Docks shopping center in Brussels to check for maternity and baby stuff, I got some beautiful maternity dresses.

The lunar new year fell on the first of February in 2022, our family WeChat group was filled with joy. One of the Chinese traditions is that the adults give out red envelopes with cash (lucky money) to the next generation, it is actually a custom that symbolizes the relationship between adults. Anyway, in my family, everyone was so happy about the news and the hassle we went through, they started sending us the lucky money for our unborn baby.

I looked forward to meeting our baby again in week 20 for the next ultrasound.

Everything was perfect, now that I looked back, it was actually the calmness before the storm.

Acute Appendicitis

On Monday 7th February, all of a sudden I suffered from intermittent stomach pain, it felt like the stomach flu. I had it in the past too, but usually, it lasted for a few hours only. But this time, I had it continuously for one day and a half, so we went to the emergency room of Helig Hart in Leuven.

Long story short, after 3 hours of waiting alone (due to COVID-19, R could only wait outside) and being checked by different doctors, in the end, I was diagnosed with acute appendicitis by the radiologist. The surgeon suggested operating immediately.
Both R and I were concerned about the baby, but apparently, medically it seems to be riskier to treat appendicitis conservatively during pregnancy than operation, as appendicitis could come back any time, and it is more difficult to operate if the baby is bigger. The surgeon also explained that medically there was no evidence that the operation with anesthesia caused any defect in the baby. So I was pushed to the operating room 10 minutes after the diagnosis.

Before entering the operating room, I was able to see R for a few minutes. I was scared, it was the first time ever I had an operation on me with general anesthesia, I didn’t know what would happen, and if I was able to wake up or not. The doctors were even not sure where I would be resting after the operation, but he was very kind to promise to give R a call after the surgery. R had to drive back home while I was being operated on.

The last thing I remembered was that the anesthetist gave me general anesthesia, I complained it hurt my blood vessels a bit, and she said it was normal, then I fell asleep.

After surgery

When I woke up, it was already 3 am in the morning, I felt amazing, it seemed that I hadn’t had such a deep sleep (although it was only 1 hour and a half) since I got pregnant. I was surrounded by the nurses and the surgeon. The surgeon was calling R to tell him that the surgery was over, and all went fine, no further infection was spotted as the operation was done in time. I heard R asking him if he could speak with me, and the surgeon put the phone next to my ear. R asked on the phone “How do you feel? “.

I answered still with eyes closed ” I feel very well, you should go to sleep”. Then I heard him and the nurses around laughing, I didn’t really know what happened. The next day when I met R, he told me that due to the anesthesia, I spoke very loud, but very very slow, like a sloth “You..should..go..to..sleep”, it sounded amusing, but he was happy that I seemed to have loads of energy.

After the surgery, one nurse stayed 30 minutes with me to check the blood pressure and the wound, then she told me that someone from the gynecologist department would come to pick me up for further care. It was because I was pregnant, that follow-up and aftercare would be done by the gynecologist as they have the history of my pregnancy.

Just like that, my hospital bed was rolled from the emergency operation room to the delivery room of the gynecology department, it was 3 a.m. on the morning of Wednesday when I settled down in a private hospital baby delivery room alone. Multiple nurses came in to check on me and explained if I needed anything I should push a red button above my head, especially if I wanted to go to the toilet.

Except for the physical pain in the belly, I actually felt very energetic, I even felt a bit excited, as this room would be the room I deliver my little baby after a few months (the room was equipped with an area for changing the diaper and bathing the baby), I always wondered what it looked like.

I started video chatting with my sister and parents, as I was too excited to sleep. I told them about my experience, so far I felt I had been taken care of by the medical staff quite well, especially in a private hospital room, it was like in a hotel with room service.

At around 7 am, 1 nurse and 1 midwife came to check on me, and asked me some questions:

“Any nausea feeling ?” – “No”
“Fever? ” – “No”
“Headache?” – “no”
“Are you hungry?” – A firm “YES”.

They both started laughing, I guess they seldom saw a patient with such good energy after an operation, they said they had to call the surgeon to see if I could eat something. The hospital then provided me with yogurt and toast or white bread for the 3 meals of the day.

They also explained to me that Dr. C was not working in Helig Hart that day, but she would see me and the baby the next day before I exited the hospital, that was nice, it meant I could meet the baby one week earlier than the 20-week appointment.

Around 10 am, R came to visit me, it was nice to have him, as we could chat, and he could help me to reach the toilet, we found out that because we were in the delivery hospital room, there was even a sofa bed on which he could stay the night (it was a set up for the father to accompany the new baby)! What a luxury for us. Were I a normal appendicitis patient, I would be admitted only in a normal care room, then R could only visit during specific hours, and I would be alone during the night.

That evening, R proposed to watch a comedy movie to cheer me up, no, not a good idea! Because only after 2 minutes, I found the laughing really hurt my belly which was only operated on less than 24 hours ago. So we watched some calm New Year performances, I was extremely happy with the company.

Since pregnancy I had to go to the toilet during the middle of the night, around 5 am R helped me to go to the toilet, and afterward, we had a quick chat about the baby, we even had some idea about his official naming, we both felt he has gone through a lot of hassles since the second trimester, so we definitely wanted his official Chinese name to contain a word meaning “health”, we were almost reaching an agreement that night.

19 weeks – Ultrasound

The next morning, I was provided with clean hospital surgical clothes, and I was able to take a shower with R’s help. At 10 am we had an appointment with Dr. C, her office for consulting is in another building but is accessible via tunnel and elevator. Due to the pain in the wound, I was provided with a wheelchair, a nurse helped me by pushing the wheelchair to get to the waiting room after a 5-minute walk.

I was excited and nervous, R helped me to get on the bed for the ultrasound so we could check the baby. It was the 4th time we saw him. Dr. C was very quiet that day, she was very busy with her left hand moving the probe on my belly, and her right hand doing lots of measuring on the size and heartbeat of the baby.

“Is the baby in a good position today”? I asked carefully. “Hmm, no, your baby is suffering”. I didn’t ask anything further as I saw she looked very serious and was really busy doing lots of measurements.

After the 15-minute ultrasound, R helped move me back to the wheelchair in order to sit in front of Dr. C’s consultation desk, so she could explain to us what was the situation. She started drawing on a piece of paper illustrating my belly, the placenta, and the baby and explained that my situation was much more severe than she initially predicted. She explained a few observations:

1. The placenta appeared thicker than normal, which pushed the baby into a very narrow space, he was quite stuck.
2. Due to the malfunction of the placenta, there was very little amniotic fluid in the sac, the baby was not able to move freely, which was why he was in a very strange position and pose. His feet were against his face, and he could not easily adjust.
3. The baby was not getting enough nutrients from the placenta, he was already trying to compensate by pumping more blood to his brain. The ultrasound showed that the blood was pumped much faster to his brain than to other parts of the body. – He was trying his best to survive
4. The baby was lacking oxygen and nutrients severely, his head was 2 weeks behind a normal baby, and his body was 4 weeks behind
5. His weight was 160 grams while a normal baby at this time should have at least double the weight.

After she explained all the facts while drawing, Dr. C looked into my eyes and said: “If we do not do anything, the baby might die in your uterus very soon”. Her eyes slowly turned red but her voice remained steady. “Unfortunately at this moment it is too early to induce the baby and save him outside, as he is too small, we need him to be at least 500 grams… “

I went from silent tearing to sobbing very heavily, I felt I could not breathe.

“I am really sorry, you can take off your mask “.

My left hand was pressing on the wound on my belly, and my right hand trying to dry my tears. Last night I experienced laughing was not good for my after-surgery wound, but actually crying hurt even more, as the sobbing caused short breath which shook the muscles on the belly, it hurt so damn worse.

Dr. C continued: “In such a severe case, some parents are very dedicated, they prefer to continue the pregnancy and let nature decide, we respect that, but keep in mind we then need to monitor very frequently as the baby might stop his heartbeat any moment, there is nothing we can do about it. As parents you can also choose to stop the pregnancy, then we can arrange an induced abortion which is very close to natural delivery. If you choose to stop the pregnancy I do need to formally discuss it in the staff meeting to have an official confirmation”.

R and I have been together for more than 10 years, we only decided to start trying for a baby 2 years ago, when we considered ourselves mature enough. At that time, I finished my second master’s degree, our work was stable, and we had a shelter.
We thought it was not responsible to bring a baby into the world if we were not yet financially and emotionally ready. I realized that so far, having a baby was the only thing in my life that I wanted but could not get by working hard, there were simply too many things out of my control. After 1 year and a half of trying, nothing happened, we went to the fertility center to check if there was anything wrong, turned out we were both healthy. We were advised to keep trying for another 6 months, with less stress. Finally came our luck.

This time, we were emotionally and financially ready, however, ridiculed, and physically, seemed I was not ready to provide for this baby.

“The choice is in the hands of the parents. “
“I think I’d like to stop the pregnancy, he is suffering too much already, it is enough for all of us.” I looked at R hoping he would agree with what I said, he nodded to me, and I was so lucky that our thinking process was always in sync.

“There is a silver lining on this matter, in such cases, some moms also react physically when the body detects that the baby does not have enough nutrients. It will try to pump more blood to the uterus, causing hypertension – high blood pressure, which needs to be treated also. I checked your blood pressure, and you are fine.”

I should have been happy, but I reacted almost in an angry manner “Do you know why my body didn’t react for the baby? I have always felt not so much pregnant in the first trimester, I felt my body could do more.”

“No, don’t think like this, it is unlucky this happened, but you are a very good mom, don’t ever blame this on yourself anymore.”

I couldn’t stop crying, hating myself, hating the situation, hating the poor baby trying to survive but there was nothing I could do. After multiple long breaths, I said “Thank you, doctor, I understand, it is OK”.

“No, it is not okay, but it is what it is.” She said.

I was worried about the sick leaves from appendicitis, and then the termination procedure, so I asked “For stopping the pregnancy, how much time do I need for the recovery?”

She looked at me in my eyes and said, “The physical recovery takes around one month. However, the emotional recovery – Not until you have the next one in your arms.”

Dr. C booked another appointment for next Monday in UZ Leuven to discuss the details of the pregnancy termination and brief us about the conclusion of the staff meeting.

On my way back, Dr. C pushed the wheelchair for me, I looked like a patient with an incurable disease, I was in hospital clothes, I looked dull, un-energetic, and full of tears.

I lay on the hospital bed for the whole day after coming back from the consultation, thinking about the joy and stress of my whole 5 months pregnancy. In one day, we came from naming a baby to stop him. My emotions turned me from silent tears to loud crying from time to time. Each time R came and hugged me, and repeated:

“We’ll start over, we are young and healthy, and we will have as many babies as you want in the future”. He then put his forehead against mine and then kissed me on the lips.

Photo by Ali Yasser Arwand from Pexels

Continue reading: My tragic pregnancy experience in Belgium (3)