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My Body is not Baby-Friendly

This article was edited and published at Smart Parenting PH.

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 “Your body is killing your baby.”

 These are probably the last words you would want to hear in your lifetime.

For someone who is dreaming to become a mother, it brings unimaginable pain to be told that you are the reason why you are not carrying your pregnancy to term. How ironic is it to want to become a mother and yet, your own body decides to do otherwise.

I am now a mother of two wonderful rainbow babies, Santi and Lucia, but before I was able to hold them, I had been through hell and back.

My motherhood journey started in 2012, right after my wedding. I was 28 years old then. My husband and I have been together for six years before we tied the knot.

We got a positive pregnancy test in my fifth week. We were ecstatic to be first-time parents and we sought out an obstetrician to confirm my test. I had an ultrasound but we were told that we have to wait for another week because there was no heartbeat yet.

“Masyado pang maaga.” That was what the doctor said.

Twenty four hours after, I bled. I did not know what was happening. I thought I was bleeding because of the procedure I went through earlier. Little did I know that I was already going through a miscarriage.

That was the first time I lost a baby. That was also the time that I experienced the deepest kind of grief I have ever felt in my whole life.

When people around me knew about my miscarriage, many were sympathetic. Some were just cruel.

“Ingatan mo kasi.” Someone told me this at work. While I wanted to scream at his face, I just did not have the energy to retaliate. LikeTeflon, I just comments like this slide by me. There are just many insensitive people in this world. Nothing I could do about that.

My heart bled. A lot of women apparently miscarry. But not a lot would talk about it.

In my case, I suffered in silence, shutting out the people who were trying to reach out. I didn’t think that anyone understood what I was feeling at that time. Yes, it might have been too early. Yes, we did not have a heartbeat so technically, my baby was not “alive” yet. For me, however, that moment when I saw two red lines from that pregnancy test, I was already a mother. When I lost that pregnancy, I just did not lose a child. I lost all the dreams that came with it and it was utterly heartbreaking.

The months after my miscarriage just went downward spiral.

My relationship with my husband was strained. We both did not know how to deal with the loss. I hated him for acting so nonchalantly about my miscarriage. He hated me for the “monster” that I became.

I was not clinically diagnosed with postpartum depression but I think that was what happened to me. I had a hard time coping with my loss so I poured all my energy at work. At least that was one area I could control.

When I lost my first baby, I also lost my husband. When I miscarried, I also lost my marriage.

It took several months before my husband and I reconciled and tried to fix our marriage again. Shortly after we got back together, I got pregnant again.

My husband doted on me and gave me everything that I asked from him.  We just transferred to our new house and we were excited to start anew. This was it, I told myself. I was finally going to be a mother.

That happiness was short-lived.

On my 11th week, I had spotting. I told myself that it was just implantation bleeding and that there was no need to worry. Our baby had a strong heartbeat a week ago during my checkup and there was no reason to panic. I rushed myself to the hospital and I was sent for another ultrasound.

The doctor was eerily quiet when she was looking at the ultrasound screen. She called another sonologist to confirm her findings.

I already knew what was happening even before they uttered the words. Tears streamed slowly from my eyes as I felt a deep punch in the gut.

“We are sorry. We don’t have any cardiac activity.”

I wanted to vomit right there and then. Everything went hazy. I went out of that ultrasound room and looked for the nearest restroom. I slumped on the restroom floor at Makati Medical Center, not knowing what to do.

It was happening all over again. It felt like a sick movie. I wanted to punch someone.  I wanted to shout. I wanted to curse and blame God for allowing this to happen.

I called my husband, asking him to pick me up. I then called my Mama and just cried my heart out.

I lost it again.

That was all I said. The truth is there was nothing I wanted to do but to go back to Bacolod and crawl beside my mother to feel a little bit of comfort.

Ganun ba akong kasamang tao para di mabigyan ng anak? Yung iba dyan, ayaw nila ng anak. Yung iba, pinapabayaan lang anak nila sa kalye. Bakit ako ayaw akong bigyan?

 I probably blacked out after that. I did not know how I was able to go home. My next recollection was that we were already at the hospital again for my D&C procedure.

The procedure was almost the same as if you had a baby. Only there was no baby. Only the products of conception.  My baby was called products of conception. I wanted to kick someone on the face.

He had a name. His name was Basti.

When I asked my doctor what happened, she told me that I might have APAS. My mind reeled.

What the hell was APAS?!!!

This was in 2013.

When I was diagnosed with the condition, there was not much information it. I was on a wild goose chase. I found abandoned blogs and very few medical articles about it. I promised myself to research about APAS amidst my grief.

I learned that women who suffer from recurrent miscarriages (sunod-sunod na pagkalaglag ng pagbubuntis) are possible APAS patients. APAS is a common medical term the medical community use to refer to a condition where the body rejects its own baby.

But technically, APAS is only one out of five reproductive-immunological disorders or RID. RID categories are autoimmune or alloimmune disorders where one’s immune system rejects the fetus because it is being treated as a foreign object. In some cases, RID can also be a cause of unexplained infertility.

These were the things I learned when I stumbled upon a Facebook Support Group about RID. When I joined that group, I found my tribe. It was the first time that I did not feel alone anymore. There were hundreds of us going through the same challenges. I was inspired by the stories of mommies who have overcome the condition and were able to finally hold a child in their arms.

I was spiritually renewed with their stories.

I went through all the treatments for my condition and found the best doctors.  It was emotionally, physically, and financially draining but we had to do what we had to do so that we would not look back with regrets. There were many sacrifices that we had to take. I took a sabbatical from corporate life and had to turn my bad lifestyle habits around.

Despite this, we were not lucky. More than the expenses for the treatment, the psychological effect was more taxing. Waiting was painful, especially because you do not know if you are really waiting for something or not. We did all novenas, prayed to the highest heavens.

Kulang nalang sumayaw kami sa Obando.

Almost a year had passed and there was still no baby. My husband and I decided to give up on our baby project. We told ourselves that we were okay not having a baby. We have done everything humanly possible and it was enough. We started our marriage together, just the two of us – a baby is just a bonus. Maybe it was just really not meant for us.

A day after this surrender, I had a very weird encounter.

I don’t know if I was going crazy but someone (or something) whispered in my ear that I would be pregnant if we made love that night. I told this to my husband and he just laughed it out, thinking I was only making my moves. I let him believe what he believed in.

This story cannot be left out from my pregnancy journey because a month after that whisper came, I was pregnant. I knew then with all conviction that the baby I was carrying was a gift from God.

From that first moment, I knew that the baby I was carrying would be a boy. He was a testament of God’s infinite blessing in my life like all the childless women in the Bible who were later on blessed with a son Sarah had Isaac, Rebekah had Jacob and Esau, Rachel had Joseph and Benjamin, the wife of Manoah had Samson, Hannah had Samuel and Elizabeth had John.

The journey was not easy. I had to inject blood thinners on my tummy every 12 hours. I had to have monthly infusions. We only told close family and friends and never announced my pregnancy on Facebook until I was on my ninth month for the fear of jinxing what was already so close to reality.

I woke up every day in fear. The first thing that I do the moment I wake up is to check if my baby was still moving. There was never a day that passed that I did not pray for the safety of the child that was inside of me.

And God answered.

He was in every step of my pregnancy. I prayed the Angel’s Prayer every time I injected, asking Angel Gabriel to continue protecting Santi from my killer cells. I made a promise to God that if he would give me this child, I will praise His name in any way that I can and I will make it a personal advocacy to help other women who may be in the same boat as I have been.

May 2016. Nine months after my encounter with my Angel Gabriel and 4 years after my first miscarriage, I held my son. It was surreal and yet there I was, holding the most precious thing in my life. I could not stop my tears.

The promise I made resulted to my blog, Chronicles of a Clueless APAS Mama at www.callmebalot.com where I share about my journey as well as the stories of many rainbow babies. By God’s grace, I was also made an administrator of our Facebook Support Group where we try our best to assist those who are still going through the hardships of an RID pregnancy and continue to promote awareness about the condition in the hopes of saving the lives of many unborn babies whose mothers suffer from this condition.

It is a personal dream to be able to put up a foundation to promote awareness for the condition in many parts of this country. Having handled many advocacy projects in my previous job, I have seen the power of information in changing lives. Prevention, as they say, is better than cure and one way of prevention is spreading awareness and information. However, that still remains a dream because quite surprisingly, one needs to come up with a million pesos to set up a non-profit organization. As to why, I do not understand, but that is another story for another day.

I can’t tell you that the journey of an APAS mommy will be easy. I also cannot say that all treatments will be successful. I can only tell you that we have to do what we can and let God do the rest. And if a baby is not given, know that you are complete, no matter what.

But I am praying for and with you every step of the way. May you have a rainbow baby in your arms.

If you are lost and want to know more about this condition, please visit our Facebook Support Group at www.facebook.com/groups/allaboutapasandrid.

 

 

What To Do When You Find Out You Have APAS

I remember it so clearly, that day when my doctor told me I possibly have APAS.

That was the day after I have gone through my second miscarriage. The pain of losing my Basti, my 10-week old son, was too much to bear and there I was, being told that I might have this APAS condition that was causing my recurrent losses.

I was sooo lost.

What the hell was APAS and why did I only hear about it for the first time, that time?

Days after I went home, I spiraled into endless research about the condition, looking for answers. If you are in that place right now, let me give you a big hug. But more than that, let me give you a little bit of unsolicited advice:

  1. Pause. When I first found out about APAS, I hated the feeling that I did not know about the condition so I went down the rabbit hole, researching about the condition. I think this is human nature. We seek to know the things that are unknown to us. But before you do, blood sister, pause. Your losses are a big thing. It effs you up not only physically but emotionally and psychologically. So take it easy, and breathe. Grieve if you must but more than anything else, rest. The journey will be long. And you’d need all the strength you could get.
  2. Find the best doctors. In this journey, it is important to find doctors who specialize in this condition because they can see the slightest change in your future pregnancies and can quickly adopt methods to address your situation. You can join our Facebook support group at www.facebook.com/groups/allaboutapasandrid to see who are the doctors handling cases as ours.
  3. Test comprehensively. Many are misinformed about APAS, even some doctors. APAS is only one out of five categories of repro-immune disorders. Many are found negative to have APAS and continue with their pregnancy, only to lose it again because they find out later they are positive for other categories. This is also the reason why #2 above is every important.
  4. Find a support group. Your journey will be special so find a support group that will help you in this special time. This could be close friends and family or even online Facebook groups whose members can share how they were able to overcome the burden that comes with the condition.
  5. Pray. Pray when it doesn’t happen. Pray when it happens. Children are gifts from heaven and we can only do what is humanly possible to have them. Treatments may or may not give you a child but the Heavens sure can.

I hope that this somehow, helps you at this trying time. If you have any questions, send me a message or join me in the RID support group together with the rest of our blood sisters.

Happy weekend, love!

 

Ano nga ba ang APAS?


Para sa isang ina, napakasakit na ikaw ay mawalan ng anak. Hindi importante kung siya ay nasa iyong sinapupunan pa lamang or nawala sha nung nailuwal mo na.

Maraming babae ngayon ang nakakaranas ng infertility o recurrent miscarriage (sunod sunod na pagkalaglag ng pagbubuntis). Kung isa ka sa mga nakadanas ne7to, posible na meron kang repro-immune disorder or RID.

And RID ay isang disorder kung saan nirereject ng iyong immune system ang sanggol na iyong dinadala. Maaari din etong dahilan ng di maintindihang pagkabaog or unexplained infertility.

Eto ang mga categories ng RID:

Category 1. Kulang ang katawan sa pagbuo ng blocking antibody para protektahan ang sanggol sa iyong sinapupunan. Ito ay natetest ng Leukocyte Antibody Test or LAT.

Category 2. Blood clotting disorder or APAS. Malapot ang iyong dugo na nagdudulot nang di paghatid ng tamang nutrisyon sa sanggol na nagdudulot ng kanilang pagkamatay. Maraming tests for APAS gaya ng Protein C, Protein S, DRVVT, SCT, etcetera.

Category 3. Antinuclear Antibody. Inaatake ng dugo mo ang DNA ng iyong sanggol. Ang test para dito ay ANA Test.

Category 4. Antisperm antibody. Inaatake ng iyong immune system ang sperm ng asawa kaya walang nabubuong pagbubuntis. Ang test para dito ay Antisperm Antibody Test.

Category 5. Mataas na Killer Cells. Ang iyong immune system ay nilalabanan ang nabubuong sanggol sa iyong katawan. Pangkaraniwang marker ay ang mataas na killer cells or irregular na T and B cells sa Primary Immunodeficiency Panel or NK Assay.

Kung ikaw ay isang possibleng pasyente mg ganitong karamdaman, maghanap ng espesyalista na dalubhasa sa ganitong sakit gaya ng immunologist and perinatologist. Maaari din kayong sumali sa aming support group: www.facebook.com/groups/allaboutapasandrid para maintindihan pa ng mabuti ang iyong sitwasyon.

 

 

Adios, 2018!

We now close this year and all I can say is… WOOOOOW! Days flew by like crazy and the 365th day is soon to be over.

2018 is a rollercoaster ride but it has definitely been a big improvement from 2017 when we were plagued with challenges that almost broke my spirit.

Another great blessing greeted us this year and that is the birth of my little light, Lucia Gabrielle. Her arrival completes our little family and I could not ask for anything more.

 

 

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To have one rainbow baby was already a dream come true for me and Edzel. After battling my repro-immune disorder, I never thought that I could still conceive again but as they say, at the act of our surrender and when we least expect it, God gives us unexpected blessings along the way.

That first half of the year was a blur of breastfeeding, nappy changes, and just Santiago and Lucia all the way. Motherhood never felt so raw and real and the ups and downs that came with it were all worth it.

In May, I was given the opportunity to share my story in the Philippine Daily Inquirer for their Mother’s Day Special. This was very important to me because it has been my personal advocacy to spread awareness about APAS and repro-immune disorders to hopefully save more mothers from suffering a potential heartwrenching loss.

 

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In August, with zero budget to work with and only the will and heart of several APAS ladies, we were able to hold the 1st Lay Forum on Repro-Immune Disorders. This was attended by around 180 men and women who wanted to know more about the condition and graced by five known immunologists from the Philippine Society of Allergy, Asthma, and Immunology and of course, my ever-dearest perinatologist, Dr. Valerie Guinto. Early intervention and continuous efforts to spread awareness for this disorder are the things that I believe can help couples overcome this very challenging situation.

 

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My heart overflows. The 1st RID lay forum was a success. Bawi lahat ng pagod. ❣ #GetRidofRID

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At the last quarter of the year, things just really “happened” for me when it comes to the things that are really close to my heart.

Sometime around October, just before my anniversary with Young Living, I was exposed to so many things in the groups that I was part of that I did not agree with. As a naturally empathetic person, I could not sit and watch. This pushed me to educate myself further and I went down the rabbit hole so swiftly, my mind could not keep up with my heart.

I took the plunge and invested in myself to take a certification course in aromatherapy to deep-dive into the world of essential oils in an educated, scientific, and accurate approach. This happened when I was looking for a certified aromatherapist in one popular mommy group on Facebook. I was looking for someone to help me understand how to apply essential oils safely on my kids because I saw with my own two eyes, how a supposedly safely diluted blend sensitized my little sister’s skin to the point that she was crying. I could not risk that same thing to happen with my kids so I ventured out – unfortunately, I did not find any. I thought to myself, for sure I could not be the only one.

And I was not.

And so I launched my Facebook support group, Lana Lane, where I try (so desperately in my free time) to educate about the safe use of essential oils regardless of the brand that they are using. Don’t get me wrong. I loved my Young Living oils, I still do – however, I could not justify the price that I was paying for it knowing now how to choose essential oils based not on the brand but on their therapeutic benefits. But more than that, it really was the haphazard information being thrown in the group (neat application, ingestion, among others) that really turned me off. Essential oils are powerful and without the social responsibility to promote its safe use, I just could not be part of that anymore. There is a time for neat application and ingestion, yes I agree with that but it really is not for everyday use.

At around the same time, I opened my online shop again, Lana Lane PH and I was taking orders from moms who just want to test out the essential oils first or those who really do not have the time to create their own blends for their families. I am not actively promoting yet but there are big things that I am planning for this in 2019 so pleeeaasse, pray for me. 🙂

At almost this same time, I also attended a writing workshop by Kerygma and this rekindled my calling to write a book about overcoming APAS.

I promised this book to God.

I told him that I will be a testament of His immense grace when I will successfully deliver my rainbow baby.

 

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“If you take away the writing in me, then I am not me.” What a productive day. 💙

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Two babies after, I am still here.

The call has been incessant, keeping me awake at night so I finally took another plunge.  Hopefully, the book will be finished in 2019, God willing!

There are so many people God is sending my way for my dreams to finally come true.

I have met Russell Lorenzo, the owner of Casa De Lorenzo, one of the main producers of Castile soaps in the Philippines and also local essential oil distiller and he gave me that clarity that I was on the right track.

Andrea Butje, founder of Aromahead, who had been very supportive of her students. Without her school, it would not be possible for me to have a proper venue of arming myself with the right knowledge.

Karren Renz Seña, my writing coach who has been nothing but a source of courage – from the moment that she walked into the room during the Kerygma writing workshop, I knew that God sent her my way (despite not knowing what it was at that time).

Just yesterday, I also met Charm, the owner of The Cool Moms PH, a very successful online seller and Shopee pioneer who shared with me many wonderful things to make my little dreams come true.

I also had a chance to talk to Brother Arun Gogna, builder of The Feast Bellevue and a successful author and he has given me tips on how I can have a grip on the book that I am writing.

And finally, Edzel, whose silent yet unbelievably rocksteady support grounds the ever-fickle and volatile me.

I have no doubt that 2019 is my year. It has not yet started yet the optimism that the New Year brings to my heart is overflowing.

APAS Mommy for 2019

May yours be filled with everything your heart desires, too!

 

Category 5: What Your Primary NK Assay Will Tell You

Being diagnosed with RID can be very overwhelming. There are dozens of tests you need to go through to pinpoint your condition and create an appropriate treatment plan for it.

After several years of successfully battling APAS (and two rainbow babies after), I am trying to educate myself more about the condition to help more people and to lay the groundwork for people to understand our condition.

I am currently reading the book “Is Your Body Baby Friendly?” by Dr. Alan Beer, the pioneer in reproductive and immunological disorders. If you like researching, then this book is for you.

This was my result in 2013 taken at St. Lukes BGC:

APAS Philippines Category 5

The CD that you see in your test means Cluster of Differentiation and they define the function of the cells. There are two kinds if you will notice. B cells and T cells – B cells are produced in the bone marrow while T cells by your thymus gland. These cells are what Dr. Beer refer to as your body’s special military task force that specializes in killing.

When I got my primary immunodeficiency panel or NK assay, I only looked at the NK cells part. I was so relieved that it was within the normal ranges. However, Dr. Gloria told me that she still would treat me as Category 5 and not just 1 and 2 because of my previous miscarriages. She told me that the tests in the Philippines are not complete and there is a possibility that while my NK cells are within the normal range in quantity, they can be very rabid.

Looking at my test above, you can see that I have higher than normal CD8 and CD19 and lower than normal CD4:CD8 ratio.

But what does this mean?

To quote Dr. Beer, “Autoimmune women tend to have higher levels of CD8+ T cells, higher levels of toxic TNF-alpha, higher autoimmune inducing Th1:Th2 ratio and lower serotonin levels – the same markers that are seen in women with stress-triggered miscarriages.”

Below are excerpts in explaining the different roles of the cells above from Dr. Beer’s book:

CD3 or Elevated CD3 cell levels are associated with autoimmune diseases.

CD4 are also high in people with infertility.

CD19 are also usually high normal or very elevated in women with immune-mediated infertility or recurrent pregnancy losses.

When I got a second opinion from another popular OB, she asked me to take a Th1/Th2 Cytokine Assay Test. This is done in Chicago and my blood sample was sent there. After two excruciating weeks, the assumption was validated. I had very high Th1 results.

Th1 are the cells Dr. Beer calls the aggressors. When they are on fire, they prompt the production of antibodies, killer cells and macrophages that cause miscarriages.

Truth is, it is only now that I have done my research on this. All I knew then was that my body was rejecting my baby. I didn’t want to know more.

But looking back, I wish that I could have known what exactly these numbers mean. To make amends with my past self, I am writing this now to benefit those who are still lost in this world of autoimmune disorders. This blog post is only a guide and should not supersede what your doctors say. This is purely based on Dr. Beer’s book (but totally makes sense to me).

I hope that this will help you at one point or another. I will post about the other categories soon. In the meantime, please do subscribe to my blog or leave a comment. Would really appreciate it.

xoxo

 

 

 

References:

Alan E. Beer, Julia Kantecki, Jane Reed, Is Your Body Baby-Friendly?: Unexplained Infertility, Miscarriage and IVF Failure, Explained, 1 October 2006

 

 

 

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