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TFMR - Severe Ventriculomegaly, Aqueductal Stenosis, and Rhomboencephalosynapsis, infertility & IVF

Termination for Medical Reasons, Infertility, and Your First Birthday

Your first birthday is this weekend my sweet Hadley Maeve. Or at least it’s the day that you should be celebrating your first birthday. Instead of planning a theme, picking out cakes, cupcakes, and presents, I’m planning a day of kindness in your memory. This is never how it was supposed to be. You’re supposed to be here in my arms, but I only get to love you from afar.

I never imagined my journey to motherhood would be as difficult as it has been. If I had known the path set for me, I would have started sooner. After a year of trying to get pregnant naturally, we started fertility treatments. We started with medicated cycles, then moved onto IUIs, and finally onto IVF. After 3 years, 9 months, 26 days, 6 egg retrievals, 3 fresh embryo transfers, 1 frozen embryo transfer, and 2 PGT tested frozen embryo transfers, we were finally pregnant. I cried tears of joy with the nurse who called. I then called my husband to share the good news and he cried with me. When he got home from work, he cried even more tears as I shared that you were a little girl.

After 8 weeks, I was cleared to move on from my IVF clinic to an OB/GYN. I was happy for this step, but constantly felt nervous and uneasy. The anxiety never lessened. When I heard your heartbeat, I would feel relief in those moments, but quickly fall back into anxiety. I should have trusted my motherly intuition. As we cleared the first trimester we shared with some close family and friends. Again, I was so hesitant to share as I knew something was wrong. But your dad wanted to share, so I agreed and kept my anxiety silently to myself.

I’ll never forget the anatomy scan at 19 weeks. I’ve since learned that outside of the US it is called an anomaly scan, and I now believe this term is much more accurate. I was alone as the pandemic was in full swing. I had called your dad with a video so he could watch as much as possible. When the sonographer finished, she said she would be back shortly after she wrote up the report. I suspected nothing was wrong so I told your dad I would be home soon. I sat playing games on my phone waiting for the clear to go home. Unfortunately, what happened next shook me to my core. A doctor barged into the room with the sonographer saying he needed more images. He warned that it may hurt as he would have to push hard. I hadn’t yet called your dad back as I didn’t know what was happening. The doctor suddenly pulled the transducer away and said quite bluntly: “I’m just going to be honest, there’s something wrong with your baby’s brain.” My world crumbled around me in those moments. I called your dad but all I could do was cry. Words wouldn’t form. We did an amniocentesis that night to start trying to get answers. I don’t recall this, but your dad recalls the doctor referring to you in the past tense and asking if we had considered terminating. Of course we hadn’t. I will never forget the harsh coldness of this doctor at my weakest moment.

I still don’t know how I made it home. The next several weeks passed by quickly and so slowly at the same time. We tried to cherish every moment that you were safe in my belly. Your dad would lay with me at night so he could be right there when you would kick. Your kicking confused me so much. I couldn’t comprehend how you could be so ill yet still kicking so strongly in my belly.

We had so many tests performed. We traveled eight hours to meet with a specialist we felt confident would give us the information we needed. Other doctors gave us information that made any decision we would have to make a gamble. I would not gamble with your life. The team we finally saw gave us the worst information any parent could ever hear but did it with such compassion. I will forever be grateful for that team. They told us you had severe Ventriculomegaly, Aqueductal Stenosis, and Rhomboencephalosynapsis. They informed us that if you made it to full term you would live a drastically shortened life, be in constant pain, need procedure after procedure never to get better. You would spend most of your life in a hospital. Most important to us, you would never feed yourself, breathe on your own, sit up, stand, walk, talk, or recognize your own parents regardless of how much time we spent with you. The care team said if we were thinking what they thought, we would not be making the wrong decision.

We drove the eight hours home talking in circles about how we knew what we had to do. I talked to my doctor the next day and scheduled arrival at the hospital a week later to induce labor.

Your dad has always been my rock, and he supported me even more in the coming weeks. He did so much research to create a birth plan. He also found an organization that would take pictures of you, our sweet little girl. Surprisingly, a photographer also volunteered to take maternity photos for us as we hadn’t yet had those done. I was hesitant but will cherish all the photos we received.

Labor and delivery was long and painful, as expected. Our perfect little girl was born alive on 19 February 2021. You reacted when I touched your cheek, and you squeezed your dad’s finger. You passed away shortly after on my chest with your dad’s hand wrapped around you. By far the most painful part physically was going through a D&C after delivery as I hadn’t delivered the placenta. This happened while I was awake, so I didn’t have to leave you.

We spent 2 full days in the hospital with you. We read to you, sung you songs, told you stories, and just soaked up every perfect ounce of you.

In the days that followed we met with a funeral director to plan a small service for you. Your dad planned most aspects as I wasn’t physically able to help. Your service was beautiful. We were surrounded by our closest friends and family. The pastor that had married us drove several hours to perform the service. We wouldn’t have had it any other way. My husband and I both wrote pieces to read and somehow both found the strength to read them.

In the following days I was admitted back to the hospital for a retained placenta. I had another D&C and haemorrhaged. I was placed on the Labor and Delivery floor to recover which was painful all over again. Likely more painful for your dad who had to endure hearing congratulations every time he left the room. In the months that followed I found out I had Asherman’s Syndrome and still had retained placenta which resulted in five hysteroscopies over the next several months.

I have since started going back to fertility treatments as we have one remaining embryo. Cycles have been cancelled because my body wasn’t ready yet. We are hoping to transfer soon. I feel so many bittersweet feelings at the thought of a pregnancy that will result in a healthy living child.

Terrified at the thought that something could go wrong again, and so hopeful that we may finally get to bring home our healthy, happy, living child.

I now know with too much familiarity that a PGT normal embryo does not equal a healthy living child. Ultimately, I know deep down Hadley would want us to have another child and most importantly, I know my love for Hadley is unconditional and no number of living children will ever take that away.

I will love Hadley Maeve forever, always.

To other parents who are just learning they may need to go down this road, have just recently had to say goodbye, or said goodbye many moons ago, I am SO sorry. I carry you all with me and I carry your babies in my heart.


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