Kaiser Noah

Our little Kaiser...

Christy's little son, Kaiser Noah, was diagnosed with Trisomy 18 while in utero

I am Cristy, mother of Kaiser Noah our forever 3rd child who fought for his life for 18 days from the day he was born. It was last November 13, 2019 when we found out that we are having our 3rd child. We are so excited we never thought that we will have another child since his older siblings ages 11 and 8 yrs old this year. With our excitement we immediately posted our 8 weeks ultrasound photo in Facebook. We thought everything was fine. My first trimester is totally fine. I never had extreme vomiting, dizziness or etc.

It was a smooth first trimester among my 3 pregnancies. Even my prenatal check-ups are all fine. During my 2nd trimester I had to undergo Congenital Anomaly Scan (CAS) for my 20thweek pregnancy to evaluate the condition of our baby if everything is normal. It was an hour scan and I ask the Ultra sonographer if she can see the gender of our baby even it’s not that important to us since I already had a girl and a boy so this time boy or girl gender is not that important. She seems upset at first because the baby is too small and she can’t conclude the size because the baby is shy that time that his position is not favourable for the Ultra sonographer to confirm his gender. The baby is also in breech position. The Ultra sonographer also told me that she is not sure if the baby has cleft lip and cleft palate but there is some sort of images she saw that time but because our baby is too small for his age she barely can’t conclude which she also put in the remarks on our result. She said we need a follow up CAS next month which is by March 2020.

Amn't I cute... 

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After the ultrasound...

Few days after the ultrasound, I went to my OB-GYNE and she interpret the result of our CAS. She said that there is a big possibility that our baby has cleft lip or cleft palate and she also said that our baby’s weight is below the normal for a 20 week-old baby in utero. At first I was in denial maybe the machine is not properly operated that time but our OB-GYNE responds that the machine is new and most of the time accurate of the scans. At first I was so shocked, I didn’t know what to do, my husband and I are confused. Do we have relatives who has cleft? Honestly, I got so depress by the result. Soon after that, I told myself that maybe we can do something so we can correct his physical feature. Days passed I saw my former colleague posted a photo of his baby with bandage between the mouth and nose area. I message him and he told me that his baby has cleft lip and palate but everything is fine now because there is a Charitable Institution who operates a baby with cleft lip and palate for free. When I got that message my energy comes back. I got hope for my baby so even he has cleft lip or palate I know in the future he can live a normal life since it can be corrected while he is still a baby. 

Few weeks after we need to go to Bohol, one of province in Philippines for our annual department planning. I got the clearance from my OB-GYNE to travel via plane since I am around 20 weeks by that time. Everything was fine. No vomiting or headaches. It was a fun trip with our company staff. 3-4 weeks after I had another trip this time it’s international. It was a travel incentive for our brokers in which I got the privileged to join since we are under the same team. All-expense paid by our company. I got the clearance again with my OB-GYNE. It was a 5 days trip and everything went fine. I can feel my baby’s heartbeat and his movements but I still doesn’t know his gender that time. I plan to have another ultrasound once I get back to Philippines. I can say I had a fun time travelling with me and my baby.

When I finally had my another ultrasound this time I was on my 6th month. This time he is in Cephalic position. We finally saw my baby’s gender and he is a BOY!. I can still remember my husband’s smile when he knew because he really wanted a baby boy again. When the Ultra sonographer tries to find his face and his heart he seems very not cooperative that time. He is not in a favourable position again so we can’t figure out his looks. If he has the cleft or not. If his face has any other abnormalities or not. Turn out that we don’t have ultrasound photo of him. Still my baby weight is still not normal for his age/weeks. 

Weeks has passed I had a very happy time while I’m carrying our 3rd baby. I never felt any alarming about my pregnancy, I thought everything is fine for my baby. I eat more than usual so he can gain his weight. 

7th Month with Kaiser...

During our 7th month a pandemic came to Philippines. I didn’t come back for my prenatal check-ups for almost 2 months since the government start the lockdown policy. The whole Metro Manila was put into Extreme Community Quarantine (ECQ) for a month starting March until May 2020. You were only allowed to go outside if you have a quarantine pass and no pregnant women were allowed to have a quarantine pass, only one person per household are only allowed to have that Q-pass. It’s my husband in our household who has the quarantine pass so he is the only person who is allowed to buy foods and can go outside but in a specific time schedule. When the government lifted the ECQ and change into Modified Community Quarantine (MCQ) last May 17, 2020 I plan to visit the hospital for my check-up 2 days after the MCQ. Somehow this is not as strict as ECQ. May 19, 2020 I got the chance to go to hospital for my prenatal check-up. This time the OB said I have sort of contractions already in which I can’t feel anything aside from frequent tenderness of my tummy. So she gave me meds to calm my pelvic and it really helps since I noticed that my tummy went well and no more tenderness and that I need to come back one week after taking meds for another schedule of ultrasound and prenatal check-up. She told me that she will text or call me for the schedule since the ultrasound by that time is by per schedule due to some safety protocol. It was my 36th week last May 26, 2020 when I finally had my schedule for ultrasound. During my ultrasound the Ultra sonographer (different from the first one) seems questioned a lot about me like what is the height of my husband, my height, or if I am on a diet etc. then her assistant in which is also an OBGYNE got some conversations in which I didn’t understand since some are medical terms. I know something is wrong because I need to come back again to them.

The Ultra sonographer told me to eat and drink some juice so she can see the movements of our baby. So I did. I came back after I ate 2 breads and drink water but not juice. Still she had a hard time making my baby move. I didn’t know why is that happening because after I eat the breads I felt my baby’s movement it was not that strong but I know he moves. Minutes after that her assistant which is an OB-GYNE caught my attention and told me to wait for a while outside. I know there is something going on. I feel so nervous and uneasy. Is my baby ok? Few minutes, I got my ultrasound result. Some medical terms that I don’t understand. I read below the result that my baby has a remark of IUGR (Intrauterine Growth Restriction). I search to google it said that the baby fails to grow at the expected rate during the pregnancy. That’s maybe the reason why they always told me every ultrasound that my baby is small. Then the OB-GYNE from the ultrasound room came to me and told me to follow her to OB ward. Yes OB ward because that time the clinics are not allowed to conduct private sessions with patients and I am also part of the charity patients in which the hospital gave privilege for patients that are not belong to class A-B society, our doctors are resident doctors of the hospital that offers their consultations for free in helping low income family. Meanwhile, she told me to wait in consultation room and she get my ultrasound results and other laboratory results. While waiting she put the NST (Non Stress Test) on my tummy while talking to other OB-GYNE’s outside. Few minutes, her senior OB-GYNE came. I knew it was their senior by the way they talk to her. They seems like reporting our condition to her in full respect aside from she is a bit older than other OBGYNE at the OB Ward. She seats beside me while looking at the paper that released by the NST. I know there is something not good based on her facial expression. The previous OB and my OB (which I always having my consultation) came and the senior OB told to them that the baby is not in good condition.

This bed is specially for me...

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Getting to meet my little son

My OB explained to me that I need to give birth now because my baby’s heart rate is going down. He is unstable and the only solution is emergency CS. I don’t know what to feel that time I haven’t any experienced at CS since my first two child are both normal delivery. Is It safe to deliver at 36 weeks? I am so afraid that time. I don’t know what to say but since they need my approval to undergo Emergency CS now I have to say “OK”. If that will save my baby I got to take the risk. Everything went so fast. They paged all doctors that needs in our operation. The anaesthesiologist came immediately and interviewed me. They prepared the Pedia and everything that involves are prepared immediately. All nurses that is duty that time came all to me to do what they need to do to prepare me for the Emergency CS. Then here comes the delivery time. It was painful at first because of the anaesthesia they need to put on my spinal cord. I am also afraid if the anaesthesiologist might got some error while injecting the anaesthesia to me but minutes after I feel the numbness on my lower part. When I can’t move my legs they start the operation to me. Minutes after the baby arrives. He was so small. I only had the chance to see his back only. I didn’t see his face. All I want that time was to hear him cry. “Please cry baby” that’s what’s on my mind. The he cries. I was relief hearing him cries. They transferred him immediately outside. I don’t know where but I trust the pedia that they will just might clean the baby or do some check-ups on him. I thought everything is fine. He is small but maybe as days goes by he can gain weight like other premature babies.

I was in the ward and I saw mothers who carries their child. I got hope that few hours after I can hold my baby because I am at the Room In area. One day after I gave birth my OB came and told the condition of my baby that they need to put him in NICU. She told me that the baby is small, his gestational age is only 31 weeks, he had cleft lip and cleft palate and fighting for his breath. They need to put oxygen to him to help him in his breathing. Days pass, my catheter is finally removed I thought I can finally see my baby. With some unfavourable circumstances I didn’t see my baby for 3 days since I gave birth. I was frustrated and depress. I can’t see my baby due to some safety protocol and some unfavourable circumstances. I got so many negative thoughts on my mind. I see all mothers carrying their baby crying every day. All I can do is to produce breastmilk for my baby so he can eat but I need to give it to our nurse so she can deliver it to NICU. I was so emotionally depress. On 4th day, the day of my discharge I got a chance to see my baby in NICU before I went home. While in wheel chair I ask the nurse to drop me at NICU and ask the NICU nurses if I can see my baby. Finally, I was permitted to see him. When I first saw him, I was so worried. He is so small. His gestational age is only 31 weeks that supposed to be 36 weeks but because of IUGR he stops growing inside my womb that turns out to be premature. He has oxygen tube in his nose. I can see his ribs while his breathing fast that shows that he has a hard time in breathing. I cried so much I felt so pity about my child. What did I done to him to make him like that. Am I a bad mom? I want to hug him but I cannot due to safety protocol inside NICU because of the pandemic. I told my baby how I love him, how he was loved by his daddy and his two siblings that they are waiting for him at home. I told him to fight for his life. That God will heal him. I got positive thoughts on my mind that this might be a challenge of my faith as a Christian. Yeah he might be premature but I know everything will be ok afterwards.

In all my finest...

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Kaiser has Edwards Syndrome... 

My husband and I finally went home leaving our baby in NICU since he needs medication. May 30, 2020 the NICU doctor told us that our baby needs to intubate because he had a hard time breathing and oxygen tube is not enough help for him. He also has pneumonia and some infection that time. We agreed to intubate our baby Kaiser Noah if that will help him. Three days after the doctor called me again that the baby is having a hard time while in intubate because of some blood from him that blocks the tube of intubation. I told them to find other solution and that is they will try again to use the oxygen tube since our baby might got some irritations in intubation that he can’t stand the intubation tube inside him. Oxygen tube is fine with him but here are so many times he stops in breathing. One day, the doctor set a meeting with me and my husband. They told us their prognosis about our baby. He might have Patau Syndrome or Edward Syndrome a rare condition in which there is extra chromosomes either number 13 or 18 that makes him incompatible with life because it is not normal. I actually never heard about that kind of syndrome in my whole life. I didn’t know that there is such a syndrome like that about Chromosomes? Really? What on earth is that? They told us so many complications about our baby. He has cleft lip, palate, clenched fist, rocker bottom feet, his lungs in not fully develop and his heart has holes. When we heard that I felt my world turns down. They need to confirm their diagnosis by submitting the blood sample of our baby to do the karyotyping in a genetic facility that will confirm the Trisomy if it’s 13 or 18 or not trisomy. They told us that he might not live in a week based on the books they read about trisomy cases. Going back home I googled the Patau and Edwards Syndrome, honestly I didn’t like what I read about it online.

Every day I cry, looking for a miracle or cure for this syndrome but I did not find anything. Here in Philippines we are actually lack about the knowledge for that syndrome. I thought I was the only mother who has a trisomy baby in our country. Searching online I found some mothers who has a trisomy baby here in our country but nothing survives. Devastated that is how I describe my feeling that time. One week pass, he is still alive. He still fighting for his life. There are so many times he died but because of the NICU nurses who help him bringing his breath again he survives. June 1, they finally permitted us to visit him. Since then we everyday visited him to have some couple of hours with him. We know that are baby is such a warrior because if he survive his first week he can survive more weeks to come or even months. One week at NICU we got our running bill and it’s almost Php 100,000 already. Another cause of my depression aside from thinking about our baby’s health is our financial problem. I am the only provider of our family since before the lockdown my husband lost his job because the company he works before is finally closed days before the government announces the lockdown. I already got my SSS maternity benefits in full amount but that money we have is not enough to support for our baby’s medication. Every day there is new medicine or medical supplies for him. Aside from that is the cost for Karyotyping. My sister knew about our problem and she helps me to find any support group that can help me emotionally and financially since we really need help. She messaged me about Every Life Counts Page in which I join and I immediately message their email address and their FB messenger about my baby’s condition. Hoping for emotional and financial help. Two weeks pass and he gains weight which is a good sign for him.

One day while staying in NICU the doctors suggested to have him baptized because they will never know when our baby can stay longer. We agreed to baptized him since he is almost two weeks old and while he can stay with us we wanted him to know our God. 2nd week came and he still fine but during his 14thday we were called by his doctors everyday even in the middle of night to come to hospital because he had some frequent desaturation. I honestly thought those time I might lose him but every time we came to NICU he will gain his breath again that makes him fine. While at NICU, I’m happy seeing his eyes looking at me or listening to him cries because those are signs of life from him that makes me happy as a mother who has a warrior like him. It was June 13, 2020 when his doctor called me early in the morning asking us to go to hospital and told me that they will transfer our baby to Pedia ward in which we can stay with him every day in 24 hours. We never thought that it will be the day he will left us. Few hours after the nurses arranged him in the pedia ward and fed him via tube I saw him falling to sleep. I thought that was just a normal rest. Minutes after I saw the pulse machine’s number going down and down. I immediately stand and rushed to him and waking him up. I’m calling his name. Making my voice louder so he can hear me. Massaging his breast his arms but he is not responding.

My husband called the pedia nurse and they do the same. They called his doctor and the doctor came doing the same thing to him to wakes him but his pulse remains falling. At the side, me and my husband are crying. We know that this might be his time. He might be tired or his heart is tired. His doctor said us before that he has two holes in his heart and there will be time that it will get tired from breathing even they always give him medicine to help his heart to pump normally that cardiac arrest is the usual cause of Trisomy babies’ death. They still reviving him but our baby is not responding. The doctor called the ECG Staff to confirm if there are heartbeats then ECG technician came and do the ecg on his chest. The doctor reveals us the ecg result in a paper with a straight line confirming that our baby has no heart beat and he is now dead. My tears burst and I feel so numb. I thought everything is fine with him. I told him before to fight for his life but if in case he cannot do the battle anymore he can rest. I prayed before to God that if that day happens please take my baby in a way that he won’t feel any pain struggling anymore, like he was just sleeping and when he wakes up he is in heaven. That’s the exact situation happens to my baby during his last hours with us. We thought he was just sleeping when we tried to waking him up he doesn’t response. He is now with our God. Our warrior is now God’s newest angel. He fought for his life and we never gave up on him. Our love for him is greater than any gems in the world. He is our blessing and our treasure.

We knew that while our baby is fighting for his life, we as his parents must also fight for his life even the doctors always told us that he won’t live long. What we can only do is to support for him as his parents so he can also live as he wants. Our baby’s 18 days in this world left us a memory that our family can treasure in a life time. He thought us to be strong. Our faith might be shaken before but we need to remind ourselves that he is a blessing from our God. Only God can decide our path. We need to surrender everything to Him and make him the driver of our life. We lifted everything to our God. At the end of the day, trusting God is still the best. We thank God for sending people who help us in this time we needed the most. It might be difficult at first but those 18 days that we have the chance to be with our child it such a miracle already. God gave us his miracle of life. Having a chance to meet our baby, hug him, kiss him and taking photos with him are truly memories that I will never forget. I thank God for giving our baby. He is never forget. He is forever in our hearts. Our blessing, our warrior and now our angel

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TRISOMY 18 or EDWARD's SYNDROME arises because of the presence of an extra chromosome. There is a significant risk of miscarriage before birth, but, quite contrary to recent reporting, studies have found that the average duration of survival for children who lived until birth with Trisomy 18 was 14.5 days; with 39% of babies surviving for more than a month, while 8.4% survived for more than a year.

Rasmussen SA1, Wong LY, Yang Q, May KM, Friedman. Pediatrics. Population-based analyses of mortality in trisomy 13 and trisomy 18. 2003 Apr;111(4 Pt 1):777-84.JM. http://www.ncbi.nlm.nih.gov/pubmed/12671111

Links Trisomy Help http://www.trisomyhelp.org/