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APAS Diaries: Waiting for the King

Tin Osorio and her rainbow baby

Rest and take a break if you must but you should still continue trying and fighting ☺

A couple who surpasses great challenges towards having their little bundle of joy – who go through unexplained infertility or recurrent miscarriages – is admirable. 

Not everyone is lucky and sometimes, not all of us get the support that we need from our very own family. I have talked to women who go through the process on their own and it is truly heartbreaking. 

So, it is always a story for me to share when husbands are always there for their wives, waiting with them and supporting them on this (to quote Tin) – physically, emotionally, mentally and financially exhausting slice of our #APAS life. 

I was so inspired with Tin’s story. 

It is a story of patience, resilience, and the attitude of never giving up until they are granted their heart’s desires. 

While we are not 100% sure that our treatments will work or if that rainbow baby is going to come one day, it is beautiful to witness the strength and the grace of every single APAS warrior who continues to fight every single day for their own stork to come. 

 

Name: Tin Osorio

RID (repro-immuno disorder) Categories: 1 and 2

OB: Dr. Eileen Manalo

Immuno: Dr. CJ Gloria

Age: 32

How many pregnancies? 2

How many miscarriages? 1 (natural twin pregnancy)

Live births? 1

How did you know that you have RID? 

  • My husband and I found out we were pregnant with twins after 4 months of getting married. We never heard their heartbeats even after following the doctor’s advice of taking medicines and bedrests. My then-OB had to give me medications so I can have a spontaneous miscarriage. I was so devastated when that happened that I researched daily on possible causes of miscarriage. Of course, I found out that the number 1 reason for miscarriage is chromosomal abnormalities and that a miscarriage happens to 10-20% of all pregnancies but I couldn’t accept that. I found out about RID in the internet and I talked to my OB about it and I said I want to be tested. At first, she didn’t want because I only had 1 miscarriage and I was young (28 years old then) and generally healthy. However, when the RID test results came out, she referred me to Dr CJ Gloria, my immunologist. 

What did you feel when you first found out you had RID? 

  • I was both relieved and puzzled. There was a sense of relief because finally, I know the reasons why our twins are now angels. I was also puzzled because I couldn’t understand why some women have RID and why a women’s body will attack a baby to terminate a pregnancy, which is a very natural thing. 

What preconception treatments did you have? 

  • After my miscarriage, we couldn’t get pregnant again naturally that we did IUIs and IVFs. I was doing LIT regularly (every 5-6 months), taking vitamins and probiotics but on our last IVF cycle, we did lipid infusion prior the embryos transfer.

What is the greatest challenge of having RID? 

  • Having RID does not affect my daily life per se. I can do my daily activities and RID does not affect my energy level or mood. I think the greatest challenge is addressing RID because the treatments can be costly and there is no 100% guarantee. I was doing LIT for years and taking aspirin (as per doctor’s advise whenever I have IUI) but we just couldn’t get pregnant again. Of course, there are still many factors that will affect a positive pregnancy but that is a different topic.

How long after the treatments did you get pregnant? 

  • About 3 years. Early 2016, I started consultation with Dr CJ Gloria and did treatments and it was in 2019 that I got pregnant again thru IVF.

What were your medications during pregnancy? 

  • For the entire pregnancy, I was doing either lipid or IVIG infusion monthly depending on my ultrasound results and suggestion of Dr CJ Gloria. Dr Eileen Manalo also put me on daily aspirin and prednisone but I forgot for how many months. 

Any advice to those who are diagnosed with RID and are still trying

  • Rest and take a break if you must but you should still continue trying and fighting ☺

Please share your RID timeline

  • 2015 – miscarriage
  • 2016 – I found out I have RID and I started treatment
  • 2016 to 2019 – I was doing both RID and fertility treatments
  • 2019 – pregnant thru IVF

What is your greatest realization? 

  • I realized that having the right doctors and being well informed are very important. Wrong diagnosis and treatments make the baby journey longer and harder. While it is important to be patient in waiting for the right time when you will get pregnant (or will get pregnant again), it is also crucial to make the conscious effort in finding out if your body is ready to get pregnant or what treatments do you need to make your body ready. 

What/Who helped you through this difficult time?

  • My husband and our families. Needing both RID and fertility treatments are physically, emotionally, mentally and financially exhausting so it is very important to have a strong support system.

Thank you, King, for coming into the life of your mom and dad. Thank you for being an inspiration – a testament of hope and the ultimate symbol of the love of two people who did not give up. 

October is Pregnancy and Infant Loss Awareness Month

 

I have been inactive with my blog over the past few months. Things have been really busy since Covid happened. Juggling my businesses, moving forward with my coaching endeavor, and spending quality time with the kids have been tough to manage as professional and personal boundaries were challenged.

But all is good. All is good.

Today, I just wanted to drop by to honor all the angels we have lost in this journey. My little Basti & Basti are always missed and they are one of the big reasons why I am so passionate with my advocacy.

I just recently launched by Lost but Found Sisterhood, which is a support group for women who need a tribe who would understand them in their journey and their grief. As a coach, I have wanted to really work with women both as a Certified Grief Coach and as a Life Coach to help them move forward and reach their highest potential. If you feel that this is something for you (whether you need support or want to give support to our fellow sisters), do join! We will be more than happy to have you there.

In the meantime, take care everyone and wishing you and your family safe and sane days ahead!

Love and light,

 

 

APAS Diaries: They Come in Threes

“You don’t owe anyone an explanation of why you’re still not pregnant or keep experiencing loss.  It doesn’t make us less of a wife/mother/woman if we still haven’t born a child.”  

And this touched my heart because this resonates with me all the more now. The worth of a woman is never measured by having kids. Success in marriage does not end if you are able to have children and raise them. There are times that God has a different plan for couples and they should not be criticised for this because for all that we know, they are already beating themselves up for what they are going though.

Vanessa’s story is very dear to me because she is a long-time friend and I personally witnessed her struggles before she was able to hold her babies (yes, babies!!) in her arms.

I knew Vanessa from college and it was through another friend that I learned about her journey of unexplained infertility where they were trying to conceive for eight (8) years but to no luck.

When I knew that Vanessa and her husband were planning to have IVF abroad, I told her  about RID. I told her about the condition because I saw in our APAS and RID group that there were some instances where unexplained infertility can be traced back to RID. I asked if she would want to have herself tested for RID first because the tests would be a fraction of the cost that they would spend for IVF.  And even if they would have a successful IVF, it would still go to waste because the body would just reject the baby if she was positive in any RID categories.

Vanessa took the tests for RID and she was positive in four out of five categories. Buuut, I am ever thankful because despite this, she gave birth to wonderful triplet boys with the right treatment from her medical team (and coupled with gazillions of prayers and support for sure)!

Without further ado, here is the story of the terrific three and their even more terrific momma!

Name: Vanessa 

RID Categories: 1,2,3,5

OB: Dr. Anthony Marc Ancheta (IVF Specialist), Dr. Lucia Antonio and Dr. Kay Parreno-Bautista (Perinatoloigist and Sonologist)

Immunologist: Dr. Carol Gloria

Age: 36 yo

How many pregnancies? 2

How many miscarriages? None, but had 1 ectopic pregnancy and 1 failed IVF

Live births? 3

 

1.  How did you know that you have RID? 

After almost 8 years of trying to conceive, my husband and I decided that we were ready for IVF.  We felt that we have exhausted all efforts and treatments to get pregnant and IVF was our last and  final option. It was also on the same year we found out I was RID positive, thanks to Balot, a friend from college, who convinced me to get myself tested before we dive into the plan of going for IVF.  We would have gone through unnecessary frustrations of failed procedures, all because we were clueless  I had RID.

2.  What did you feel when you first found out you had RID?

I was disheartened and anxious when I found out I tested positive with 4 out 5 RID categories. It meant that there will be delays in our timeline for IVF.  I was not getting any younger and our funds to pay for the treatments was definitely not limitless.

3.  What preconception treatments did you have? 

I was on Prednisone, Aspirin, Innohep injections, LIT and a half dose of IVIG prior to embryo transfer.

4.  What is the greatest challenge of having RID? 

For me, it was the uncertainty of not knowing what will happen next.

Will my body respond to the treatment?  Will I get pregnant? If I get pregnant, will the treatments keep my body from attacking the baby?

We were thrilled when we found out we were having multiples.  But I was also worried from hearing so many stories about pregnancy loss from RID.  Carrying triplets is difficult, but carrying triplets while having a RID condition is totally a different kind of difficult.  It was a painful and delicate pregnancy and RID added up to our ordeal.   I looked like I was about to pop when I was still 5 months pregnant and imagine how every 2 weeks for the entire part of my pregnancy, I had to go see a sonologist to closely monitor the babies’ growth and heartbeats.  I can barely walk 10 steps because my belly was heavy and I ache when I walk, so I had to be on a wheelchair everytime we go out for check ups.  I even have to go to Manila every month on a same-day flight to get my intralipid treatment, until my belly became so heavy, I could no longer travel and was given the option  to just have my intralipid treatments done in Bacolod ℅ my MD Sister-in-law.   My bum was in a state of torture from innohep injections done daily.  All these became so tiring, stressful  and costly, but it was the only way we can make sure that the babies are safe and healthy until they are ready to come out.  I’d take pain anytime, for as long as my babies are okay.

5.  How long after the treatments did you get pregnant? 

It took us almost 3 years, 3 series of treatments and 2 IVF procedures (embryo transfer) before we got pregnant.

6.  What were your medications during pregnancy? 

For my RID, I was on Prednisone, Aspirin, Innohep, LIT, IVIG (full dose of IVIG) and monthly IntralipidMy IVF Specialist prescribed Progesterone (oral, injectable and suppository) during the first 3 months of my pregnancy. 

7.  Any advice to those who are diagnosed with RID and are still trying

You don’t owe anyone an explanation of why you’re still not pregnant or keep experiencing loss.  It doesn’t make us less of a wife/mother/woman if we still haven’t bore a child. 

8.  Please share your RID timeline

Terrific Three: Dre, Ethan, and Theo

May 2017 – I found out I was positive with RID (Categories 1,2,5)

June 2017 – started my treatment (LIT, Prednisone and Aspirin)

December 2017 – was given the go signal to conceive naturally by Repro Immuno but did not get pregnant

July 2018 – started another round of treatment in preparation for IVF (LIT, Prednisone and Aspirin)

Jan 2019 – First Embryo Transfer (IVF) – failed; 

Feb 2019 – Found out I was also positive with Category 3; started with another round of treatments in prep for our 2nd embryo transfer

April 2019 – Second Embryo Transfer, succesful pregnancy 

Nov 2019 – Delivered my triplets at 33 weeks

10. What is your greatest realization? 

That we are not always in control of everything.  Sometimes, we have to learn to let go and let God.  

Like when for the past 7 years that we’ve been trying to conceive, I would sometimes cry silently in frustration everytime I get my period.  Later on, I slowly learned to give myself some slack and focus on my relationship with my husband.  We agreed that if ever the IVF won’t work for us, that we let it go and move on to live the life ahead of us with a happy and content disposition. Little did we know that God was also busy preparing the surprise of our lives. The two of us would have been spending this summer travelling if our IVF journey did not turn out to be successful. With the ongoing COVID crisis, we are just glad we’re safe and healthy and we’re delightfully spending the best time with our 3 precious baby boys in the comfort of our home. God is good. 

11. What/Who helped you through this difficult time?

My husband of course, who’s always been my source of strength and sanity . He always sees the good things in any facets of adversity and would tell me that everything’s going to be alright.  He tirelessly took care of me when I was literally nested on a recliner seat until I delivered our boys – he would clean the house, cook, and be my personal nurse. 

Our family who have also been extremely supportive to us – physically, emotionally and financially.  We never have to ask, they’ve always been there. 

Good friends who would check on us virtually and those who would visit and bring food and a good laugh. 

Amazing MDs who took great care of us. 

Dr. Anthony Mark Ancheta – IVF Specialist;

Dr. Carol Gloria – Repro Immuno;

Dr. Kaye Parreno-Bautista – Perinat OB and Sonologist

Dr. Lucia Antonio – OBGYN who delivered the babies; and

Dr. Michelle Lemoncito – Endocrinologist.

Most of all, GOD! He listened to the desires of our hearts; sustained us every step of the way.  There were times when we would doubt whether our finances would sustain my treatments and out of nowhere, blessings would just come. 

Thanks Van for sharing your story and I hope this would inspire people to know more about APAS and RID if they are experiencing recurrent pregnancy losses or failed IVFs. And at the same time, this is a plea to everyone to be a little kinder to couples who do not have children because there could only be two scenarios: they don’t want kids (and it is not our business if they don’t) OR they are going through a medical condition that they are trying to cope with (and this is already tasking on their part as it is).

May this story inspire you to do what is humanly possible if you want kids and lift everything else to a Higher Power who always knows what is our Highest Good.

Take care everyone and stay safe!

P.S. Do you want to share your rainbow story and inspire other sticky blood mamas? Send me an e-mail at callmebalot@gmail.com. 

Immunologic Tests for APAS and other Reproductive Immune Disorders

In 2013 when I joined Antiphospholipid Antibody Syndrome (APASFacebook support group, it had barely a thousand members. Now, we are nearing 9,000 members. It’s is a double-edged sword because the increase means more moms are being diagnosed with APAS and other reproductive-immune disorders (RIDs).

APAS is only one out of the five different RID categories based on Dr. Alan Beer’s 2009 book, Is Your Body Baby-Friendly. The latest 2019 edition does not include the categories, but immunologists maintained them due to simplicity and ease in treatment guidance.

When my doctor warned me that I could have APAS, my world turned upside down. During that time, seven years ago, there were very few references about the condition, and I was really grappling on the next action we would take.

The best way to start is to look for a doctor that specializes in treating RIDs, more so someone who has had much success in managing the condition. It is of utmost importance to find doctors who you trust and who you are comfortable with because you will be working with them for the whole duration of your pregnancies.

A woman suspected to have RID may need to be looked after by several doctors: an obstetrician-gynecologist or perinatologist, an immunologist, and in some cases, a fertility specialist and endocrinologist. (Click here to check which doctors your need in your team.)

I was more than grateful to have found my primary physicians who took care of me during my successful pregnancies with Santiago and Lucia. They are Dr. Valerie Guinto, who is a perinatologist, and Dr. Caroline Gloria, an allergist and reproductive immunologist.

Your need to take a series of immunology tests

To confirm if you indeed have a RID, your ob-gyn or immunologist would require you to undergo some immunology tests to check in which categories your case belongs.

In the past, we have seen doctors who only test for APAS or Category 2. However, based on anecdotes that we have witnessed in the Facebook group over the past few years, it is best to get tested for all categories because treatment and medical protocols vary in each one.

The following are some of the more common immunology tests required: (Note: You need to discuss these with your doctor. This list is only a reference on what you can expect if you are suspected of having RID, and it is not meant to be a substitute to your doctor’s orders.)

Category 1: Tissue Type Compatibility

Lymphocyte Antibody Test

This test measures the level of blocking antibodies in a woman’s blood. According Dr. Beer, “inadequate response for this test can signify the inability of a woman to produce blocking antibodies, which protect the fetus from rejection.”

Tissue Crossmatch

In this test, the husband’s lymphocytes are mixed with the serum of the wife. If the results come out negative, it means that the wife may not be able to produce the blocking antibodies needed to protect her pregnancy.

Category 2: Blood Clotting Defects

Dilute Russell Viper Venom Time or DRVVT, Silica Clotting Time or SCT, and Kaolin Clotting Time or KCT

These are different tests to measure blood coagulation or the presence of lupus antibodies. These tests measure the length of time it takes for the blood to clot. Problems in blood clotting can cause miscarriages, preeclampsia, preterm labor, among others.

Antiphospholipid antibody tests

These tests measure the presence of antibodies to phospholipid molecules that are critical for the implantation and growth of the embryo. When these antibodies are present, they disrupt cell function and can cause pregnancies to fail early.

Category 3: Immunity to Pregnancy and Antibodies to the DNA

Antinuclear antibody test

It’s also a blood test where the woman is checked for antinuclear antibodies. If she has positive results, she may be suffering from an immune imbalance. According to Dr. Beer, this test is often weakly positive in women experiencing infertility or recurrent pregnancy losses. The presence of these antibodies can cause inflammation in the placenta and can lead to implantation failure or pregnancy loss.

Category 4: Antibodies to sperm

Anti-sperm antibody test

This test measures if the man or the woman is producing antibodies to the sperm, which can hinder conception. According to Dr. Beer, both men and women can have anti-sperm antibodies. The presence of these antibodies results in the inability to conceive normally.

Category 5: Natural Killer Cells and Antibodies to Hormones and Neurotransmitters

T/B/NK cell enumeration test, NK cell cytotoxicity test, Anti-thyroid antibody tests

These different tests measure certain antibody levels produced by the woman. According to Dr. Beer, any variation above normal levels can predict future pregnancy loss.

Not all hospitals or laboratories offer all these tests. It would be best to consult with your doctor on which laboratories or hospitals to go to so that they can guide you properly and manage your expenses. They’re all specialized tests, so prepare to spend. Some patients would require more confirmatory tests based on these initial results.

Author’s note: This article first appeared in Smart Parenting last March 15, 2020. View my other articles here>>

Dr. Guinto answers questions about APAS

This transcript is found in my book, Lost but Found as an appendix. My doctors, Dr. Valerie Guinto and Dr. Carol Gloria, have been most gracious in sharing their expertise about APAS and RID/RIF.

Hope you can support my book and share with women who may be suffering from recurrent pregnancy losses. You can get my book here. 

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In this interview, my obstetrician and perinatologist, Dr. Valerie Tiempo Guinto sheds light on APAS/APS. 

Dr. Valerie Tiempo Guinto is the Chief of Maternal-Fetal Medicine Section at the University of the Philippines-Philippine General Hospital. She was also the President of Philippine Society of Maternal Fetal Medicine in 2017 and is the Head on the Task Force on Recurrent Pregnancy Loss of the Philippine Obstetrical and Gynecological Society.

  1. What is APAS? 

Antiphospholipid antibody syndrome or APAS or APS is an acquired condition wherein the individual’s immune system harmfully reacts to the individual’s own body or self, manifesting clinically as increased clotting in the veins and in the arteries and/or pregnancy loss. The clots may break and get thrown to the circulation and affect major organ systems such as the brain, the kidneys, and the lungs. In pregnancy, it can cause repeated miscarriages or stillbirth.

  1. How prevalent is APAS in the Philippines? 

We do not know the exact number for this in the Philippines, although in my practice as a maternal-fetal medicine specialist/perinatologist, I see many mothers afflicted by this condition. According to international studies, it can affect up to twenty percent to forty percent of women who had at least two miscarriages.

  1. How is a person diagnosed with APAS? 

The diagnosis of APAS rests on documentation of the presence of two criteria: clinical and laboratory. For the clinical criteria, there should be at least one episode of a thromboembolic disorder (increased clotting and clots thrown in the circulation causing damage to organ systems) and/or problems in previous pregnancies, such as severe preeclampsia causing premature delivery of a baby, growth restricted babies, stillbirth, or repeated miscarriage. For the laboratory criteria, at least one of the prescribed laboratory tests should be positive.

  1. What are the symptoms of APAS?

People who have APAS have problems with increased clotting, which may manifest as stroke (usually before forty years old) if it’s the brain that was involved.  There may also be problems with the lungs and other organs like the kidneys, after they are subjected to conditions that would further increase clotting such as immobility, long hours of air travel, and the presence of a chronic disease or pregnancy. In pregnancy, the pregnant woman may develop preeclampsia or hypertension in pregnancy early or before the eighth month of pregnancy, repeated miscarriage, stillbirth, or growth restriction. The association of APAS with infertility, however, is still controversial.

  1. How is APAS treated? 

Thorough evaluation of the medical condition is done prior to pregnancy and involved organ systems are treated first before trying for pregnancy. While trying for pregnancy, low dose aspirin is started. Once pregnant, further anticoagulant treatment is given. In some cases, some other immunologic treatment administered by reproductive immunologists is given to further control the condition. In the baby, the pregnancy is closely monitored by fetal surveillance techniques done by maternal-fetal medicine specialists/perinatologists to see complications as they develop. These are addressed accordingly. The pregnancy is pushed to term or as close to term as possible to improve the outcome of the pregnancy. Delivery may be through vaginal or caesarean section depending on the mother’s and the baby’s conditions.

  1. Who manages an APAS pregnancy? 

APAS is a condition needing multi-specialty care. The maternal-fetal medicine specialists/perinatologists are trained to work-up before and after conception and manage women and their babies with this condition from before conception to after delivery. Maternal-fetal medicine specialists/perinatologists went through five years of medical training, four years of residency in obstetrics and gynecology, two years of subspecialty training in maternal-fetal medicine and have passed rigid examinations (written, oral, and practical examinations) to qualify as subspecialists in the practice of high-risk pregnancies. They work closely with the reproductive immunologists who administer the immunologic treatment and help control the condition in the mother.  Other specialties involved are rheumatologists (when there are connective tissue diseases such as systemic lupus erythematous), geneticists, reproductive medicine/infertility specialists (when there is infertility), other specialties in internal medicine, nutritionists, and other allied medical professionals.

Hope this helps, loves! Dr. Guinto holds clinic at Asian Hospital, St. Lukes BGC, and in Joshua Clinic near PGH. Join the APAS and RID Facebook Support Group to check her latest clinic schedule.

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