‘She wasn’t getting enough air. She was almost gasping and was quite purple. It was pure torture.’: Woman gives birth to baby girl with Treacher Collins Syndrome, ‘Her disability won’t hold her down’

“In the days leading up to our sixth baby’s birth, we had no idea what lay ahead of us. We were relieved to have a safe car seat ready and waiting for her, along with all her basic baby needs. We were planning a home birth, as we always had quick, uneventful deliveries with our other children, and we had such a wonderful experience with our previous home birth.

My water broke one night, after having quite the laugh over something dumb I said to my husband, Jeff. It took me by surprise because we were three weeks out from our due date. The labor took longer to kick in than I expected, but once it started, Shelby arrived quickly.

As I pulled her up to my chest, I noticed her ear looked small, but I chalked it up to the typical squishiness of a newborn and just soaked in that precious moment with her. I could sense something was wrong by the look on our midwife’s face. As she lifted Shelby away from my chest to give me a better view, I saw that she looked different. My inner mama bear kicked in, and I thought, ‘So what? What is the point of showing me her differences?’ I just stared at her in awe, with nothing but love and admiration.

In the midst of my post-birth haze, I realized she wasn’t getting enough air. She was almost gasping and was quite purple. My mama bear rage turned to concern and I was grateful to have two midwives there, who could pick up on the warning signs so quickly.

The next moments were a whirlwind of emotions as the EMTs arrived and took Shelby away. Jeff rode with her as I stayed back with my midwives so they could assess my stability and get me cleaned up and over to the hospital. That was the longest hour of my life. I was handed a bagel I really didn’t want to eat. I sat in a rocking chair, empty-handed and broken-hearted. I was itching to get up and take off in any car I could find, just to be with my girl. It was pure torture.

When we finally arrived at the hospital, I was brought to a room where my dad and Jeff were waiting. The reality of our situation hit me like a ton of bricks at that moment, but I tried to keep my composure so I could listen to any information the staff had to give me. They were still working on Shelby, ensuring she was stable before bringing us in to see her.

As we walked into her room, my heart sank. I couldn’t see much of her precious little face because there were tubes and tape. Had they not been a life source for her, I would have taken them out and rushed her home where my mama heart wanted her to be. I should have been home on the couch nursing her, surrounded by Jeff and our kids, smiling and admiring every little inch of her. But we were here, in this hospital room, with the nicest people you’d never want to meet (at least not in this circumstance).

That first night was filled with a lot of assumptions rather than answers, but those assumptions ended up being correct. Our daughter has Treacher Collins Syndrome. She has underdeveloped ears, cheekbones, and jaw that make her appear a little different than most of us. Her jaw sits far enough back that her tongue pushes on her airway, so she had to have a tracheostomy tube put in to help her get enough oxygen. She also has a feeding tube in her stomach, as eating by mouth was a long and bumpy learning experience for
her.

She spent the first five weeks of her life in the NICU. We visited every day until I felt under the weather and on that day, her grandparents went up to love on her. I just remember crying on and off all day, missing my baby girl, while simultaneously feeling horribly guilty for not being present enough with my other kids. It was a struggle to try to find a balance between hospital and home.

So many people sent meals, babysat, mailed gas cards, blessed us with good wishes, and did whatever needed to be done so our focus could be on getting our baby home where she belonged. The outpouring of love and support took our breath away.

In the two years since Shelby’s homecoming, we’ve spent many hours in-home therapy and driving to doctor and specialist visits. We have put a lot of energy into doing everything we can to help our family adjust to a new normal while making her comfortable and safe.

She has had one outpatient procedure since her time in the NICU and has many more surgeries and procedures ahead of her, but we know she will thrive through it all because she is an amazingly strong and determined little girl.

The impact Shelby has had on our lives, as well as the lives of so many people surrounding us, is beyond explanation. She has proven her disability won’t hold her down. She is a spunky and headstrong toddler who likes to dance to music, climb all the furniture, and make great attempts to keep up with her older siblings. She loves hard, protests hard, and plays even harder.

Currently, the only therapy Shelby has is speech, and we are working on sign language as well. For a long time, she had it easy in this department because all she had to do was point or squeak her cute little voice and everything she wanted would appear. Now she’s learning she needs to sign or speak words to get what she wants and let me tell you, her two-year-old attitude comes out full force in those instances.

She is so fun, so snuggly, so full of life, curiosity, charm, and grit. We’re always hearing such wonderful sentiments from loved ones and strangers alike, about how she has impacted them in one way or another. It makes our hearts soar, knowing this little girl can bring such light into the world without lifting a finger.

We never knew our life would take this turn, but we are forever grateful God chose us to love and raise Shelby Lyn. There are so many difficult things about being special needs parents: worry, fatigue, loneliness, fear…. but the blessings far outweigh any darkness and we are beyond blessed by Shelby and the rest of our children. Pouring yourself, your entire soul into another person like this is just about the highest honor we could think of. Our faith has been strengthened, our voices have been found, and our view of the world around us has been blown wide open. Shelby has changed all of our lives for the better.

If you are a new special needs parent, in any capacity, we want you to know that you are capable! You are so blessed! You will find much struggle as you walk through life with your precious child, but you will see that every bit of pain, every sleepless night, every medical scare, every moment of fear is worth having them here with you. They will change you for the better. They will make such a wonderful impact on the world around them. Keep pressing forward!”

This story was submitted to Love What Matters by Jeff and Emily Terry from Michigan. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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