Diagnosis Story: Heather and Emersyn

July 19, 2026

Diagnosis Story: Heather, Mama Bear to Emersyn

We found out we were expecting Emersyn in April of 2025, just 6 months after losing twins in my early first trimester. Em was our 7th, and she was our 4th planned homebirth. Not long after finding out she was on the way, my husband got offered a job 2,000 miles away in Texas. So at 20 weeks pregnant, we moved across the country.

We had an ultrasound done just a few days before moving, and they noticed she had a 2-vessel cord instead of a 3-vessel cord, cysts on the brain, and just seemed smaller. The suggestion was that once we got settled, to get a follow-up ultrasound. 

It took about a month to get everything transferred, and I was sent to a diagnostic office that told me up front they don’t normally do ultrasounds. Nonetheless, they rushed through it and told my midwife our daughter had 2 bad kidneys and was still measuring 3 weeks behind. My midwife sent us to an MFM doctor. 

They did the scan at 29 weeks and told me that they were concerned with what they were seeing. At least one bad kidney, an underdeveloped cerebellum, possible holes in the heart, and clenched fists. They suggested an amniocentesis.

Four days later, our world came crashing down: Trisomy 18, and the odds of her reaching 1 were incredibly low.

During this time, I started researching support groups and found Mama Bear Care. They immediately sent me a Hope box filled with things to help me handle all the emotions and what to expect with appointments and the NICU. It included a beautiful tiny dress for her and framed artwork of Psalms 139:13, which later went in her room in the NICU. I was so grateful for this group to see that there were so many babies living and thriving with Trisomy 18, and that gave me hope. That was how Emmy got her middle name. 

We decided to take it week by week. By week 34, they started talking about induction, claiming that every week her risk of stillbirth would increase. I also knew that if we didn’t wait, she would have a harder time on the outside. So every week, I politely declined when she passed her biophysical. I wanted her to have time for her lungs to develop. 

At 36 weeks, I asked if we could try to get to 38 so that she would come just a few days after Thanksgiving. One of the doctors agreed to do the induction exactly at 38 weeks. I went in for my weekly biophysical at 37w2d and discovered the blood flow was starting to reverse. 

Em was still breech. Since she was my 7th, small for her size, and I had no prior c-sections, I was given ‘permission’ to attempt vaginal birth. Off to the hospital we went.  We started low-dose Pitocin for 4 hours before agreeing she wasn’t tolerating it, and so we prepped for my first c-section. 

Emersyn Hope Johnson was born on November 25, 2025, at 6:11 pm weighing 3 lbs 9.7 oz. She was born fighting to breathe and was whisked to the NICU after a brief skin-to-skin session with me on the operating room table.

The neonatologist didn’t expect her to make it through the night. 

12 hours later, I was there for my 2nd visit, and she walked by. She saw us and immediately rushed in. She told me Em was a fighter!

Emersyn was in the NICU for 77 days. She went from level 10 on the CPAP down to a cannula, then to room air within 6 weeks.  She was having issues with her liver, one functioning kidney, 3 holes in her heart, and an underdeveloped cerebellum. She also had issues with low blood sugars that caused us to adjust her feed length from 1 hour up to continuous and then back down. But she proved statistics wrong day after day. I visited her almost every day and stayed the night at least once a week. Dad and siblings visited whenever they could.

During this time, we were switched to a new rotation of neonatologists. This new one wasn’t happy that we were planning on bringing Emmy home with an NG tube for feeding. For a solid week, she kept pressuring me to get her a g button, but we refused. I finally had to get a 2nd opinion from the cardiologist to see how he thought she would handle the surgery, and he said he wouldn’t consider her getting it done because she shows no complications with the NG tube.  Between that and showing them that we could proficiently change her tube without staff help three times each, we were cleared to continue her feeds at home by an NG tube.

At 67 days old, while we were setting her up for discharge, a routine CARES was done. They discovered she had a 102° fever. A sugar check was done: 310. She was never over 120. It was decided she had an infection, so labs were done. Preliminary results blamed a UTI. So after more labs, it was later decided to do a spinal tap to make sure the infection wasn’t worse. She passed. 

After 10 days of IV antibiotics, she was able to come home! We had so much fun with her at home. I barely slept between her scheduled feeds, medicine at specific times, pumping, homeschooling, almost weekly specialists, physical and oral therapy, and attempting to keep the house functional so that Dad could work to keep the house over our heads. 

After almost 2 weeks, Em spiked another fever. Urgent care wouldn’t touch us after seeing her medical history and sent us to the ER, which determined another UTI and that she needed to stay the weekend and get another spinal. We discovered her bladder wasn’t developed properly, and that’s why she was getting UTIs. So she needed to be on a daily antibiotic.

She was getting stronger by the day. Her large hole in her heart became small, so we were able to stop her heart meds. Her liver was not as bad as they thought; it just needed time to grow. Her hands became looser. Her feeds got bigger. Dad, I, and a little help from big brother, learned how to replace her NG tube proficiently, even at 4 in the morning (little stinker).

Month by month went by, and we started planning for the future. Just after we moved to Texas, we found out my oldest was expecting our first grandchild! We were so looking forward to Emmy becoming an aunt!

On April 27, 2026, she woke up grumpy. Dad went to work, so I passed her back and forth with the oldest child, keeping her calm. I discovered she seemed more relaxed in the bedroom, so for the first time since bringing her home, she was left alone in there to rest. I came in at 3, set her up with her feed, and went to do things around the house. At 340, I went in to finish the feed and discovered Emersyn wasn’t breathing. She went into the arms of Jesus. 

Afterwards, I knew I could lean on the other Mama Bears. They prayed over us and sent us another helpful box to help with the grief and life after the loss of our little one. God created her perfect and was incredibly generous, giving us 153 glorious days with her. She’s been in Heaven now for 79 days. We’ve all missed her every single day since then, and I will forever love my little blip in my life.

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