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Mosaic Trisomy 22 – The Story of Laelynn Faith

Mosaic Trisomy 22 – The Story of Laelynn Faith

Today I would like to share with you the story of Laelynn Faith. Laelynn’s mom, Krista, found my group online, and she’s been an incredible source of inspiration for many. She’s spoken out about her daughter’s story in detail, and also chose to donate breast milk after Laelynn’s death.

This is a long story, and one worth reading. Krista painted the full picture, which I think is so important when reading these stories. A snapshot just doesn’t do it justice at times. No one can ever understand what TFMR parent’s go through, until they themselves go through it, but stories like these can help to inform others of the truth and reality of these situations.

A huge thank you to Krista for sharing today.

Part 1

10.31.19:

Your due date-my angel Laelynn Faith. I have so many mixed feelings about today. I’ll be honest, most are extreme sadness. Not only did we lose a pregnancy and child, we lost a swishy bitty newborn, a fierce little toddler, a sassy and silly child, a wise ass teenager, an confident adult, a very wanted addition to our family.

It’s been so important to me (and my husband) to get to a good mental and emotional status to be able to share not just part of her story, her entire story. I’m going to share in parts-because if you know me it’s IMPOSSIBLE to leave out the details. 

Before losing Laelynn, I knew of loss- as in miscarriage or stillbirth, but I had NEVER heard of our particular type of loss -TFMR, which is the abbreviation for termination for medical reasons.

It is when a child is diagnosed with a major chromosomal, genetic or anatomy anomaly in that they would either not make it to birth, not live long after birth, have an extremely poor quality of life and/or require numerous major surgeries to potentially live, or a mother’s life is in danger to continue a pregnancy.

It includes babies without kidneys, major parts of their brain, missing all arms/limbs, major spinal anomalies, Trisomy 13 and 18 and numerous other various genetic concerns. 

Thus, all I ask is this. This is LAELYNN’S story. It’s one my family was a part of. It has brought me to my knees so many times and it was the hardest decision we’ve ever prayed about and been given answers to.

Until you’ve been put in an absolutely impossible situation as we were, you can NEVER know what you would have chosen at that given time. I pray that no one else I know would ever be put in such a horrible situation.

Already since sharing our loss, four other friends shared with me they experienced the same type of pregnancy loss as well after me: TFMR. 

I pray this never affects any other families, but all too unfortunately now know that even the tiniest thing can go wrong and turn into something major. I pray you withhold your judgment for what you cannot fathom. Laelynn was so loved, so desired, so prayed for. We suffer so she does not.

Part 2

Yes, we’re that couple who gets easily pregnant and I’m that lady who has easy pregnancies and thus LOVES being pregnant. I know many of these faucets can be quite annoying, irksome or downright crazy to others.

I have friends who battle infertility, miserable pregnancies or numerous pregnancy loss, so I know we are lucky in this aspect. I’d never lost a pregnancy before, so while I always knew it was possible, that often means the blind thought of “It won’t happen to me.”

I was ok until week 6.5, when I had a tad bit of cramping and spotting. My midwife brought me into the office for an ultrasound as I was convinced this was my 1 in 4 miscarriage, as it was my 4th baby. But our little bean had a heartbeat, and I was reassured it was a fluke.

Later on when I think of this time, it reminds me of what a strong bean my Laelynn truly was. Many studies have been done on spontaneous miscarriages and evidence based studies quote up to 50% of first trimester miscarriages are due to chromosomal abnormalities.

The next solid 10 to 12 weeks were miserable. I’d never been nauseous or exhausted or experienced major food aversion, and I was pretty miserable. I had a terrible GI bug and lost 5 pounds instead of gaining weight.

There were lab concerns for hyperthyroidism or gestational diabetes, but after seeing an endocrine specialist, all was in the clear from my medical team… but I couldn’t shake a bad instinct feeling.

I ran into patients or friends who were shocked with my bump and asked why I didn’t announce anything, but I couldn’t figure out why either. That gut instinct was intense.

Finally- around 18 weeks -after having a very quick 16 week ultrasound, I decided I wanted and needed to shake my ominous feeling and made the social media post. We’d known since 12 weeks that our 4th baby girl was on the way, with 3 living girls, but I didn’t and couldn’t listen to negative response about this (yes, gender shaming happens CONSTANTLY) and kept the gender a secret.

I felt a tad better by this time, but kept wondering why I rarely felt Laelynn move when every ultrasound she was jumping around the screen. Thinking this was just due to not being pregnant in 5 years, I figured being busy was the reason.

Part 3

20 week ultrasound:

We brought the 3 girls and neighbor/nanny/super hero BB. The girls were so excited for about 5 minutes, then maniacs for the rest of the exam. We’d kept the sex a secret (see part 2 for why or read: people say rude things in front of my children), so they were all convinced we were having a boy, but equally happy to switch teams when a girl was announced. 

As a medical professional for 14 years, RN the entire time and pediatric nurse practitioner for 8 years, I’ve seen my fair share of ultrasounds, so I was closely checking out the heart, spine, brain, movement, etc.

My baby girl was hopping around the screen, but I could not understand why I could barely feel her, as this was my 4th pregnancy!

After the ultrasound, I was pulled aside by the technician who’ve I’ve known for 10 years to mention growth. “Are you certain of your dates?”

I was definitely puzzled with this, but we were because of our dating ultrasound at 7 weeks. Everything looked on par with the ultrasound other than the major finding of growth delay measuring 16 days behind.

I saw my midwife and talked about my miserable first trimester with nausea, aversions, weight loss, etc. and figured this was the growth problem. Plus, my middle daughter is my little peanut and I’m not the biggest gal, so we thought it was a little fluke.

Nevertheless, it was recommended that I make myself sick on protein. I needed minimum 60 grams per day. They were worried as if her size was due to her umbilical flow, my placenta or otherwise and referred me to Maternal Fetal Medicine (MFM).

At 21.5 weeks, I went to my first MFM appointment and had another ultrasound for growth, etc. which specifically checked out the placenta (normal) and umbilical flow (both to and from baby).

The umbilical flow was slightly lower than typically normal, but still within range. Additionally, they found a “bright” area over her mitral valve. Overall, I still felt good and they mentioned I should have a follow up appointment in 2 weeks with a fetal echocardiogram and see the pediatric cardiologist (who I briefly worked with when I was on the cardiac surgery team as a nurse practitioner).

Part 4

The day after my MFM appointment: Geneticist phoned.

We discussed concerns of IUGR (Intrauterine growth restriction) and CHD (Congenital heart defect). She mentioned considering having an amniocentesis… she felt there was a 50/50 chance this was due to a chromosomal or genetic anomaly.

We decided to immediately have an amniocentesis done for confirmation. My previous lab work had been low risk for anything alarming, but we were reminded an amnio was diagnostic, not a screening and would also look for any duplications or deletions.

21.5-22.5 weeks: Operation gain weight.

I just wasn’t gaining weight and had a close friend with a baby also with IUGR whose baby rapidly gained weight when she made herself half sick off protein, so I was going to do the same thing! PB, Cheese, eggs, nutella, protein shakes, protein bars, bacon, ham, ice cream, milk, yogurt, protein bread, avocado… I made myself gag eating so much. I was certain having a rough first trimester was her small size rationale and it was time to remedy such!

22.5 weeks pediatric cardiology: a dear PA friend got us into the office asap.

I saw a dear trusted and well known cardiologist with many images of my little lady’s heart-we previously worked together when I was with the cardiac surgery team. Our final diagnosis was mild congenital heart disease (CHD) due to a thickened right ventricle and smaller than normal pulmonic valve.

It was so reassuring to me and we left the visit in extremely good spirits with plans for monitoring.

22.5-23.5 Work. Rest. Sleep. Pork up momma and baby. Happy, happy. 

After all worries previously, I actually was excited for the 23.5 week appointment. I was certain my little lady was bigger and stronger, I was kicking my fears to the curb. Though I still felt only tiny movements, I visualized her getting bigger and stronger… after all, she was beyond that huge 23 week mark of viability… this previously floated to the NICU nurse was feeling good! I was certainly ready to have good news for a change.

Part 5

23.5 weeks appointment:

Ultrasound started off typical, measurements of baby, uterus, umbilical cord then switched to the heart. 45 minutes later, I realized the appointment was taking entirely too long.

“How much has my little girl grown?” I ask.

“She’s 3 weeks behind (21 days) and measuring at 20.5 weeks,” the ultrasound tech answered, “1% for head, femur and abdomen.” 

I started silently sobbing, as my hopes for growing my babe evaporated.

The tech finished her exam and had us move into another ultrasound room. This was the Maternal fetal medicine fetal heart specialist’s room, and my pediatric cardiology provider had great things to say about her.

Another 20 minutes later, this medical provider momma was unable to stay silent. Drilling began… tell me about concerning things, signs, and what is so worrisome?

She showed us her concerns… new abnormal fluid around the heart, her entire bowels being “bright” which meant she was not getting good blood flow, umbilical cord concerns, her forward umbilical flow was at abnormally low levels and often going away from rather than towards her. And yes, she was even further behind in her growth. 

After that ultrasound was complete, then MY MFM provider did his own ultrasound… yes 2 plus hours of views and evaluations. Then my husband, my MFM provider and I sat down and discussed all concerns.

We were told that it wasn’t looking good. She wasn’t considered 23 weeks OR viable due to her small size. She was more along the line developmentally of a 20 week old.

She had congenital heart disease. There were new findings of poor bowel function and fluid around the heart and umbilical cord dysfunction and it simply did not look good.

He wasn’t certain, but he knew we wouldn’t be full term, more like best case scenario would be 28 to 30 weeks, but with everything alarmingly popping up so quickly… he actually was more concerned she’d be stillborn. He was not sure if this would be 6 days or 6 weeks before it happened.

Our current options were extremely bleak. We could continue a pregnancy that would be preterm at best with an extremely small baby with congenital heart disease with unknown organ status due to lowered blood flow, or choose termination for our deeply desired child. 

I don’t remember asking questions or clarifying anything or even walking to the car or (stupidly) going to work. I just shut down.

Part 6

23 weeks 4 days:

After the MFM appointment of hell, I actually still had to get back to work. I’m not sure honestly how, but I made it through my afternoon patients. 2 actually were longtime patients (side note: my patients and their families are absolutely amazing 🙌) who, of course, asked about the pregnancy.

Since 20 weeks my answers varied between most frequently a lie “Great, trucking along,” or rarely the truth “They’re worried about her growth, heart and other concerns.”

Both of these patients I gave the truth to, and both sent well wishes and offered prayers. After both visits, I rushed out of their rooms to cry in my office. I had almost become blind to my feelings in being able to turn off or on my tears over the past month, which I never feel is good. 

That night, after the chaos of the homework, dinner and bedtime of my living babies quieted down when they were in bed, my husband and I collapsed onto our bed. We were so mentally exhausted and not ready to face the future.

We debated and agonized over this impending choice. I felt sanity leave my body that night and melted into a mass hysteria. I completely understood what was being told to us, but could not and would not know there was no hope.

Being a previous floor nurse who went to NICU, I’d seen so much tragedy that all the information was pointing to, but there were those rare miracle babies. This could be us…

How do you handle getting to VIABILITY without a baby that is viable? How?!?!

I think my husband was still in shock. It was the worst night of my life. I have never felt I was having a mental breakdown, but I certainly did that night.

I could no longer breathe or catch my breath and felt my body ripping into a million pieces. I was shaking and nauseous and felt as if I was dying.

I told my husband I didn’t have enough information to make any decision and that I’d never even consider termination. I said the only way they’d get me to this clinic was to drug me and drag me there. I’d never willingly go. 

As a couple, we decided to wait until we either had more answers or something changed. We knew whatever decision we’d make wouldn’t be made because I wanted to do something or Steve wanted to do something, but because we as Laelynn’s parents agreed on this tumultuous decision.

Part 7

23 weeks 4 days:

After Steve fell asleep, I lay in bed unable to do anything, but stare at my ceiling. An hour or so later, I started praying- that Laelynn could be healthy, that this wasn’t happening, that I’d wake up from this nightmare and she’d be perfect.

I still couldn’t sleep and replayed everything over and over in my mind again. Finally, everything seemed to stop and I suddenly had clarity. My daughter was more than likely dying. I had to be realistic to this fact and focus on what I could do about this situation. I decided the most important thing was to pray for guidance with this choice. I prayed and prayed and my final prayer was this: 

“Heavenly Father, if there is no hope for my child, please send me a sign. Please let something be found in her microarray (looking for chromosomal deletions or duplications from her amniocentesis) if this wasn’t meant to be. I will know then that without a doubt, you are letting me know that if I continue on, she will suffer. She would experience pain and she would never survive. That will then take this torturous decision off of us as her parents and we will know we are giving our Laelynn grace.”

I was finally able to sleep.

23 weeks 5 days: 8am. My phone rings.

It is our genetic counselor. She has our microarray results and says “This will shed some light onto these concerns we’ve found and how this pregnancy will likely progress. It came back positive for Mosaic Trisomy 22. This is a random, not genetic, chromosomal anomaly. It was a fluke of either an abnormal egg or sperm. 23% of her cells are abnormal and 77% are normal. Hence, Mosaic Trisomy 22. Most of these babies don’t make it past the first trimester, and even more don’t make it to birth. The likelihood of her living out of the hospital ever is very slim and there are only a few cases studied to live through childhood.”

I had started crying the moment she called, as my instinct immediately was bad news. I instead told her this was the answer to my prayers. God gave us the answers, so we didn’t have to choose. I have never had such a fierce and direct answer to a specific prayer in such a powerful way.

Part 8

My husband and I both agreed -as Christians- that when you pray for answers, they may come in a certain way and that you should follow their guidance, even if you are heartbroken, scared and terrified.

The medical provider in me knew I was making the right choice, but the mother in me (and yes, provider) was absolutely heartbroken and devastated. I’d kept this child growing in my womb for 6 months and now had to choose…grace?

It seemed so horribly miserable to make as her parents (and her siblings and extended family) suffer this. We only made it through our decision promising each other when the burden was too great that we would not waver in our decision. Our daughter would not suffer in utero- with fluid filling her tiny heart or flowing into her brain as we were just waiting for her to die, or on that tiny possibility that she gained weight… have machines, fluid, abx, etc. to keep her alive, as she would always be trapped in a body that would suffer.

She would still most likely die. Regardless, her final outcome would be death. We decided it would be pain free and without suffering.

We told our MFM provider our decision and were given further horrifying news. Our states legislation laws did not allow us to make this decision, as she did not have a common well known chromosomal anomoly not compatible with life, nor did she have MAJOR organ anomalies.

We were given the name of one surgical clinic four hours from our home. This was our only option other than waiting for her to pass in utero.

We traveled hours away and paid thousands out of pocket, so our daughter Laelynn Faith Centric was stillborn after a 3 day surgical procedure– absolutely pain free at 12 oz. 

All pain medication passed through my body to her. We were unable to hold, see, kiss or love our daughter.

We were unable to have her body.

We 100% will have lifelong trauma knowing that we were denied such things and such experiences that NO parent should be denied in order to bring her peacefully into the world.

When we could do nothing else, we gave her grace.

In honor of my daughter, I chose to pump breast milk meant for her, and donate to my local milk bank for NICU infant use.

I chose to raise awareness on this type of pregnancy loss through acts, services and social media.

Her life -while short- changed me and my family in a million ways- many terrible, many difficult, a few for the better, and I would have chosen her as my daughter time and time again.

We love you sweet babe. Until the day I get to hold you in my arms in heaven…

Thank you for your listening ears, love and GRACE.  #laelynnslegacy

Krista is a married mother to 4 girls she holds on Earth and 1 daughter she will one day hold in heaven . She’s a practicing pediatric nurse practitioner for the past 8 years and registered nurse for a total of 15. She enjoys hiking, traveling, reading and living near the beach.

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