Mom advocates for families going through TFMR (termination for medical reasons) after own loss

My husband, Joe, and I met 13 years ago. We really met by chance, very much in a ‘right place at the right time’ kind of way. I was living in Texas at the time, and he was living in Oregon. I was in Boston on a work trip. He was supposed to be on vacation there with his brother, but his brother wasn’t able to come very last minute. We met at a bar next to Fenway Park and hit it off. We even got the chance to go to an ALCS game together a couple of days after we met. For about a year and a half we dated long distance and traveled to see each other. At that point we decided we wanted to be together and we moved to Ohio to live together. It was quite the adventure!

We then made our way to Maryland. We got married and decided we wanted to start trying for a family soon after. We tried for 1.5 years to get pregnant and ended up needing fertility help. We found success with an IUI and welcomed our daughter, Caroline, into the world 9 months later.

I am a Texas A&M graduate. I studied chemistry and worked as a chemist and engineer for several years. I then got my master’s in teaching and taught high school chemistry. When Caroline was born, we immediately knew that we both wanted me to stay home with our children. I’ve loved being a stay at home mom. It’s been an incredible journey.

Being a mother feels so natural to me. I love my new “job” as a stay at home Mom. I am also the type of person that needs an outlet and a project going, so I created my own job independent of being a Mom that really integrated my whole world. As a scientist and engineer I was fascinated with baby sleep habits. The topic just fit naturally to me, and I started a blog about baby sleep, schedules, feedings, etc. – and am now even the author of a parenting book on baby sleep.

So essentially, my whole world is being a Mom and talking about parenting topics. I went from explaining electron configurations to a high school chemistry class, to talking about baby sleep, potty training, etc. It’s funny when I think about it, but gosh I’ve loved it. My type A-self found ways to “organize” the chaos of being a Mom. I decided that a blog would be a great thing to start. I could keep grandparents and family up to date on our lives, since they are all plane rides away. I could record what we were doing through the baby stages to refer to for our next baby and share it with other parents.

And so, my blog, Mama’s Organized Chaos was born. I think my passion for parenting and being a Mom in general really shines through. While I really love my role as Mom, pregnancy was NO fun for me. I love being pregnant, but it’s hard, and getting pregnant is also a challenge for me. I’ve had 3 successful pregnancies. The first and last we needed fertility drugs, shots, and IUI’s. My angel baby was conceived naturally the first month we tried.

When I’m pregnant I have to worry about a couple of things. I get cholestasis and have to be induced early as a result to keep our babies safe. I also have something called antiphospholipid syndrome which we, luckily, caught before my second pregnancy. This means that I have to do daily injections into my belly during the entire pregnancy. It’s rough. I also get really terrible nausea and end up in a lot of pain due to a short cervix towards the end of the pregnancy. Needless to say, it’s no walk in the park.

My birth experiences have all been unique. With my first I didn’t have a birth plan. I knew I needed to be flexible. My only request was that I wanted an epidural and that I wanted to still be able to feel my legs (I have to laugh about this request now, but the doctors managed to do exactly what I’d asked!). I had to be induced at 37 weeks due to cholestasis but ended up in the hospital a day before my induction because Caroline was clearly going to make her own appearance. When she hadn’t made enough progress the next day, I was given Pitocin to help things along. It was a smooth birth and I thoroughly enjoyed giving birth. It was an incredible experience and I was in no pain.

My second birth is more than just a birth story. It’s also a story of loss, so I’ll come back to that one in a moment.

My third birth I decided to do naturally. No idea why, really, but something in me decided I really wanted to do this. I made the decision in the hospital at the last minute. I was fully expecting myself to want the epidural, so I really hadn’t even voiced my thoughts to my husband ahead of time. I figured it was just a thought and no way I’d actually do it. In the moment, however, I was really drawn to the option of doing things naturally. I, again, had no birth plan.

I was being monitored for cholestasis and the plan was to induce early at 37 weeks, but something felt off. We did biophysical profiles and our little guy looked great on the screen, but he felt like he was moving less to me. Luckily, the doctor trusted my gut and told me he’d let the hospital know that they were to induce me if I came in at any point.

At 34 weeks I trusted myself and went in. William also had plans to come before we could fully induce, and I started contracting and dilating in the hospital without help! The next day, again there was not enough movement, so they broke my water and gave me Pitocin. I bounced on a birthing ball until I couldn’t take the pain anymore.

They checked me and said he was crowning already. Being that he was 34 weeks and 2 days, they needed the NICU team there, so I was told not to push!!! I was in excruciating pain - not pushing when my body wanted to be was ridiculously painful. William spent 1 week in the NICU and then came home a healthy boy! I am forever grateful that I trusted my instincts and got him here early.

The birth story of my second child, is an important one to tell. The experience changed my perspective, my path as a mother, and my passion as an advocate for families going through TFMR (termination for medical reasons).

When I was 15 weeks along in my second pregnancy, we went in for our first trimester screen, or what is often called the nuchal translucency test. The ultrasound looked beautiful, but the blood work came back with a 1 in 77 chance of Downs Syndrome. We did more blood work (the cell free DNA testing). This told us that we actually weren’t looking at T21, but rather T13. I remember the phone call like it was yesterday. I had never even heard of Trisomy 13, which is a fatal chromosomal abnormality that always results in a miscarriage, stillbirth, or devastating loss after usually only maximum a few days after birth.

I didn’t know what questions to ask. I was in shock. The doctor explained that the DNA tests are highly accurate, but that this didn’t make sense, since our pre-screening during the nuchal translucency test had not indicated any issues. He cautioned that it could potentially be a false positive result, but that we wouldn’t know for sure until doing an amniocentesis.

I held back my tears and tried to verbalize my questions. When I was no longer sure what to ask, I paused and asked for some good news- I asked for him to tell me the sex of the baby.

At this point I knew I needed a name to be calling my little baby. “A girl”, he said, “it’s a girl”.

I immediately thought, ‘Her name is, April. April Rey Villegas’.

My heart didn’t get a chance to enjoy the news of my baby girl before it returned to the devastating news of Trisomy 13 as a potential diagnosis. I was told to call the office first thing in the morning to set up an ultrasound. They’d look for abnormalities. If any were seen, we’d have our confirmation. If none were seen, we’d still be in the dark. Abnormalities don’t always show up as early as week 15. So, a healthy looking baby on an ultrasound, was not a confirmation of being in the clear. We’d have to do an amniocentesis.

I was terrified. Caroline was 2.5 at the time and she came running to me saying “Mama it’s ok.” I was gasping for air and couldn’t talk. I managed to call my husband and get out words to tell him the news.

To my surprise the doctor wanted to schedule me for the amniocentesis the following day. I didn’t know what to think, but I trusted the doctors. I talked to April and put my hand on my belly to hopefully give her strength. The amniocentesis went fine. It wasn’t painful, and April did great. She moved around the whole time, and her heartbeat stayed steady. We hung onto hope, but I knew things weren’t right. I could feel it.

The amniocentesis confirmed that April had full Trisomy 13 and that all of her cells were affected.

Accepting the diagnosis after the amniocentesis was incredibly hard for me. I knew the science behind the amniocentesis was correct. I knew it was right. But, my baby girl looked perfect. She moved and wiggled, and her fingers and toes and brain and heart all looked fine on the screen. My heart struggled to accept that this perfect baby has such a devastating chromosomal abnormality.

Following the diagnosis, we were left with an impossible decision: plan an induction to terminate the pregnancy, or we could wait, wait for her life to end on its own. Trisomy 13 babies often don’t make it to term, and I wondered how much pain our baby would be in if she were to make it to term and be alive with such defects, even for a short time. All I could think about was the chance to meet her, though, even just one moment forever in our hearts, but I was not willing to have her in pain. I did not want her to survive on machines, unable to be held, etc. – what I wanted most was peace for her and our family. All scenarios felt unbearable, we were absolutely devasted by the choices we had to make.

After a lot of appointments with doctors and genetic counselors, we finally made the call to induce the pregnancy early.

I know that many will be turned off by this story, and the thought of termination for medical reasons, but I feel the need to share it. 

Why? Because it’s real. It’s my real thoughts, my real emotions, raw and uncut. I know that there are other Moms out there that are feeling this way. I want them to know they are not alone. Termination for medical reasons is an option and it is the right path for many parents.

I also have no judgement of those that chose or are choosing to fight the fight. Our story is no reflection on anyone else’s decision or pathway. It’s indicative of our personal pathway - the one that’s right for our family. I have no ill intentions in sharing our story and my feelings on medical termination, nor any judgement of parents that have fought the hard fight with their beautiful trisomy children. 

I received many questions since sharing my story, mainly, “Why would I ever consider not fighting the fight for April?

For me, it was a matter of three words: Quality of Life. 

I did not want my child in pain. I did not want my child in surgery after surgery, living in hospitals, having a life full of therapy after therapy, or unable to lead any sense of a normal life.

I didn’t want it, and I wouldn’t put my child through that.

It is not a question of love. I loved my child so fiercely, so fully already then.

I would be absolutely heartbroken to let my child go, but I’d rather let my child go, than see her go through this misery. 

To me it is not a “blessing” to have a child alive at however old, only to have to go through the pain, the hospital stays, etc. It is not the way I wanted my child to live.

I kept feeling guilt for feeling this way, because the ONLY posts I saw, the only stories are “inspiring” stories. 

These “inspiring” stories that often don’t have the full detail, but nonetheless they are there. Staring you in the face. 

Nowhere do you see the stories of the Moms that chose “the other option”, to terminate the pregnancy.

Nowhere do you see the stories of the Moms that chose to carry to term, but to not undergo any lifesaving measures or medical procedures, and just wait for their child’s life to end.

These stories aren’t represented, and so, the guilt of the online world ensues.

I did a lot of research, and soul searching, also speaking with other parents who had Trisomy 13 babies. Rarely did people actually address my real question and tell me the reality, the surgeries, the pain, their child’s ability to lead a normal life, the quality of life, etc. The answers were not objective in any way. The answers clearly showed the love that they have for their children - which I was never doubting. But the lack of clear transparent answers, clearly answered my question as to the quality of life. 

I would give anything to heal my daughter. Saving her life is not the same thing as healing her, however. 

At 19.5 weeks I gave birth to my beautiful daughter, April Rey. She lived for 11 minutes in my arms. Caroline came to meet her. We will always cherish our moments with her, and she is forever loved.

When I became pregnant a second time, I naturally started writing about the pregnancy on my parenting blog. It just fit. Then things went south with our diagnosis, and I just kept writing. It became my therapy. I wrote after every appointment. I wrote in between appointments. I spilled my heart out in those weeks and continued to write about April after she’d died. It was very healing.

When I looked at that part of my blog, I’d been very open about our choice to terminate for medical reasons and I was envisioning a place where others felt safe to share their stories. It just wasn’t happening on that parenting blog. I mean, who wants to show up to a blog all about baby sleep schedules, when your baby is dying?

So, I started a second blog, and moved our whole story about April over to Terminations Remembered. Parents who have gone through TFMRs often get left out of the conversations on baby loss. They often feel isolated and alone in their experience and sometimes don’t even feel comfortable opening up to their close friends and family in fear of being judged. I have a strong passion to change that and break that silence. It is something that countless families have been through and it should not be a topic that is not discussed. The blog features stories from so many TFMR families now, and it is my hope that people find it and feel heard and seen. Our daughter, Caroline, was 2.5 years old when her sister April died. At 2.5 she asked a LOT of questions that we were not expecting. She grasped the concept of death far better than we realized she would, and before we knew it, she was even talking about chromosomes. It was a lot to deal with. Add to that our state of grieving, and it was a huge undertaking to also help a toddler through her grief and to understand what was going on.

After finding the right words, we fell into a good groove with her and included her in as much as we could. I wanted to capture this. There are no resources specifically for families that are going through TFMRs. There are all sorts of baby loss books, but nothing specific to this topic. This community of parents deserves specific books to help explain the death of a baby to an older or younger sibling. It’s a topic I felt so passionate about that I decided to develop and publish a series of books for that purpose! The children’s books about TFMR are a 5-part series. They are designed to walk parents and children through the process of finding out their baby’s diagnosis, to giving birth (either through labor and delivery, or a D&E procedure), to then remembering their baby, and then teaching a younger sibling (or rainbow baby) about the baby that died.

The books capture questions that our daughter actually asked us, and the right words that we used to answer her. I used our real names in these books, so it’s a very personal story. Even the illustrations are made to show our family. I intentionally refer to “the baby”, however, and not as a he or she so that it will be a good fit for everyone. It’s not until the end of the books that I mention our baby was a girl named April.

At the end of each book there is a dedication page that families can write on, and there is a dedication page of baby names from parents I have connected with in the TFMR community. There’s a help section as well where I discuss topics in detail for the parents at the end of the book. I am beyond pleased with how these books came out and hope that they are a helpful resources for families in this situation.

I didn’t even bother with trying to find a publisher. I found a great illustrator on Etsy and decided to move forward on my own without a publisher! I then self-published on Amazon and both the paperback books and e-books can be found on Amazon. The e-book bundle can also be found on my site directly, for a discounted price, and those wanting to buy in bulk for donations can also do so directly through my site. A portion of all proceeds go to funding Terminations Remembered basic costs, and a portion gets donated to the Perinatal Palliative Care team at Johns Hopkins to help parents going through TFMR.

I hope that Terminations Remembered can break the silence. Terminations for medical reasons are WANTED, desired pregnancies. It’s devastating to go through a loss like this. Parents need to be able to talk about it and find resources. My goals are to share as many stories as I can and to grow this blog enough that people can find it. I’ve been lucky to connect with genetic counselors, and I had the honor of being a speaker at their annual conference last year. They are helping to get these resources out there to their patients, and that is huge.

- Katrina, Mom of 3 (including one angel baby), Maryland, USA

I have a wide variety of resources for parents between my two blogs and books:

Terminations Remembered Terminations Remembered has our full story. It’s raw, unedited, and as real as it gets. It will remain that way.

The children’s book series can be found here. The children’s book series is specifically for parents that have gone through TFMR and is so helpful walking a child through their grief and helping parents to know how to best handle the situation and find the right words.

Our free printable birth plan for our termination and other free resources can be downloaded here. I found that it was essential to have a birth plan when going through an early induction. There are just SO many things to think about.

I have started a FB group for parents that have gone through TFMRs as a way to connect and find support as well. It can be found here.

I also have a page of stories that other parents have shared regarding their choice to end a wanted pregnancy. I have it broken down by diagnosis, so things are easy to find.

Mama’s Organized Chaos On this blog parents will find baby sleep tips, baby scheduling resources, and everything from potty training to fertility talk.

My book called Baby Sleep Solutions (available in paperback, e-book and audiobook), is everything packed into one spot when it comes to baby sleep and schedules.

I also have printable items that parents can use as a resource. Things like printable schedules by month for their baby, to potty training rewards charts. These printable parenting tools can be downloaded here.

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