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Congenital Diaphragmatic Hernia CDH – The story of Harper Rae

anonymous post

My story starts long before I was pregnant.

After marriage, we lived in a one bedroom, third floor apartment. We were in no hurry to start our family. I was on a birth control called implanon which made me feel insane but it was better than the alternative at the time, pregnancy. Health insurance was different then and that “condition” was excluded from my policy. We weren’t making much money and didn’t want that stress so early in our marriage.

I was 25 and we decided I wanted to be pregnant at 29 and have a baby by the time I was 30. I assumed unprotected sex was a sure bet for pregnancy. After my 3 years of implanon, I started taking the pill because it would be easier to discontinue. Then my best friend became pregnant and I wanted that too. I stopped taking the pill and waited. And waited. And waited.

We never saw a doctor for it, I just told myself I needed to get healthy then I would get checked out while continuing to gain weight. Fast forward 5 years, I was 33 and my husband mentioned we should get a doctor’s opinion. We never did… I didn’t track my cycles, but after the “normal” cramping, my cycle didn’t start. I assumed I was because I had a very bad stomach bug a couple weeks prior and my period would be delayed.

On election day 2020, we went to my favorite bbq place and I did not enjoy my food- we then went on a walk and I felt weird there too. My friend was to come over the next day and I needed to pick up wine for that. I had my husband grab the wine and I purchased a pregnancy test, in a separate transaction of course. I took the test when I got home- it was a “dye stealer” and I wasn’t sure I was reading it right. I sent my husband to the store for a “test with words” which also confirmed I was pregnant.

I immediately researched OBs and found one and called, to get an appointment a month away. Next I called my parents and asked them to come to my house. My mom had been “pressuring” me for a baby since the day we got married- I hid my fertility struggle from her. She screamed with joy. I took an online blood test at 8 weeks that told me she would be a girl- we kept that information private as I didn’t trust the accuracy.

My first appointment went okay, we saw her and got some pictures oblivious of the terror we would soon be facing. Over the holiday we bought her bedroom furniture and painted her room. All the while I had this looming hesitation- I couldn’t get excited.

We picked the name Harper early on but decided on her middle name the night before the anatomy scan. Her middle name was to be Rae, after a person who basically took my husband in as his own grandson, Ray. Ray passed several years ago but my husband holds him dear.

I had an elevated blood pressure reading right after Christmas so my doctor saw me earlier for my next appointment, just for my reassurance. Because of this we had my anatomy scan at 18 weeks rather than 20. I am forever grateful for this. My husband was allowed to attend the scan- this was our first so we didn’t notice anything amiss with the tech. She told me she would write up her report and the doctor would speak to me. I kissed my husband, Harper’s daddy, goodbye and waited for almost 30 minutes to be seen. It was so long that the front desk person called back to make sure they knew I was still there.

While walking back I saw the NP who confirmed my pregnancy and I could see sadness in her eyes, I had no clue it was for me. A doctor I had never met came in and introduced herself. She began telling me my daughter was extremely small (6th percentile) and they were concerned about that. Then she told me there was another problem and they could no longer manage my care, I was receiving a referral to MFM.

She said they noticed her heart was pushed to the side and her stomach was above her diaphragm. I asked what this meant and I was told there were surgeries to correct it and that the MFM would call me. I yelled at her for telling me this without my husband. She asked if I wanted to call him. COVID made this more traumatic.

It was a Friday afternoon so I had all weekend to research it… it had a name: congenital diaphragmatic hernia. A hernia didn’t sound so bad- but it was.

Her small size had us concerned that she may also have a chromosomal abnormality. I saw the MFM on Tuesday- so many people looked to have been waiting for hours and I was rushed right in. She was surprised they didn’t schedule me for an ultrasound so I was to come back after lunch to have a detailed scan. I met a few more mfm doctors and a genetic counselor.

I had an amnio- I feel guilty to say I was praying that if she was going to have to die please let the amnio kill her. I didn’t want to make that choice. The first MFM person told me I would have full amnio results in about 2 weeks. I signed the consent forms after the test where the genetic counselor told me I may be waiting closer to a month.

I wouldn’t have full results before I made my decision. They confirmed she had CDH at this appointment and said they needed to schedule a fetal echo and a team to discuss prognosis- they said they would try to do it two days later. They were unable to get all the people in place, so I went the following Monday at 19 weeks, 6 days pregnant. They said my husband could try to come but they couldn’t guarantee the providers would allow him to enter the building. He decided to stay at work, I had a silent hour long echo and went to the genetic counselor’s office to wait for a doctor.

The news wasn’t good- entire liver up, very underdeveloped lungs, but I was told her heart was ok. They discussed my “options”- giving birth 3 hours away for a nicu that she could have ecmo in, fetal surgery that I wasn’t a good candidate for because of my blood pressure and obesity, or termination.

I immediately knew that I couldn’t let her suffer. My husband was on the call at work, when he hung up I texted “come home”. The doctor mentioned I should make an appointment for 3 weeks out because if I decided to terminate I could always cancel it. The genetic counselor knew because when I left she said I understand you might not want to, but if you want to make an appointment stop at that desk, if you can’t right now the elevator is just past her desk. I left, making no eye contact, beelining for the elevator. I made it out of the office before breaking down and managed to regain my composure to drive home. But frankly, I didn’t care if I made it home safely, my world was crushed.

As soon as my husband saw my face he knew what we were going to do. We had long before agreed if either of us felt hope we would not terminate- that day took away my hope. That afternoon I emailed the genetic counselor to start the ball rolling for a D&E. Our journey was full of waiting but this was by far the worst wait. I could still feel her squirming inside me, seemingly healthy.

I told my family right away and my coworkers and anyone who asked me how the pregnancy was going. I am so glad that, while I know not everyone agreed, they were supportive. My husband’s family is Baptist. He wanted to tell them she just died but I encouraged him to tell the truth because I had experienced so much love from others and I felt he needed that love.

His parents were kind. His siblings unleashed a level of pain that I didn’t know existed. After their conversations, my husband couldn’t eat and couldn’t hold anything down- I eventually slipped him some of my zofran. I suffered with terrible morning sickness from week 7 until the day of termination. His one brother in law and sister said they don’t agree but they were praying for God to change our minds. Later, when they realized we wouldn’t change our minds they begged us not to. His other sister asked us to continue the pregnancy so that they could adopt her. It took months before I could speak to her again- it is still hard.

I asked the original MFM to review the results and confirm everything I had previously been told. The only difference was she said it was the entire lobe of the liver, not both lobes, but that information didn’t change anything clinically. She offered to call me the following week, I accepted. Our procedure was to take place at a hospital 2 hours away and I needed to be there to take a COVID test 2 days before the termination. We got a cute little airbnb to spend our last days with Harper alone.

It was the morning of the COVID test when that MFM called me- she said she spent all weekend trying to find a study that would allow her to put a survival chance into something quantifiable. She said her best guess was a small chance of survival, but she would definitely have lifelong complications if she survived. We talked about pain and if Harper was to feel any with the termination, we didn’t want her to hurt.

I asked her if these numbers can improve during the pregnancy and she said it was unlikely. It was here we learned that her heart was formed perfectly, but it was compressed and not pumping well. She was expected to have heart failure if she made it to birth… it wasn’t “just” her lungs but her heart too. We made the drive for COVID test in silence, knowing after tomorrow there was no turning back.

The next day I had the laminaria inserted with no sedation. This was physically painful but the emotional pain was far worse. Beforehand we had the chaplain speak to us and pray for her. I never felt her move after this. My only regret is not saying goodbye before this procedure- I thought I had the evening. I was uncomfortable after- it felt akin to what I imagine it would feel like to insert several super plus tampons at once.

The next morning I was at the hospital for the D&E- the misoprostol made me sick to my stomach so I was given meds in my IV prior to surgery. I woke up with no problem and was on my way home shortly. I had no complications. I did not choose to have her privately cremated so I did not receive ashes. I have her tiny feet and handprints. My milk came in- I tried lots of the tricks but the pain became unbearable so I pumped some. It took a few weeks to go away fully but I got a necklace made with the milk- another small piece of her I can keep. My cycle came back 5 weeks after the D&E.

Three weeks after the surgery it was officially confirmed she was genetically perfect. We moved out of the house with the nursery. Our new house is actually on Ray’s street, a place my husband spent much time growing up.

This is an anonymous guest post written by Harper Rae’s brave and wonderful mom.

Read April’s full story by clicking above.

Read stories of terminations for medical reasons by clicking above.

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