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Your generous giving allows Abel Speaks to support families like ours. Thank you for your partnership as we seek to ensure that every family will cherish their child’s life and have hope in the midst of sorrow!

Our journey with Elliott began in January of 2022 when we found out we were expecting for the first time. We were blown away by this miracle and immediately began to prepare to become parents. Our first few appointments came and went easily as everything looked good. We made it to our 20 week anatomy scan and decided to find out the gender – it was a joyous moment to find out we would be having a little boy!

As we waited for the doctor to confirm all of the ultrasound images taken, we started to dream out loud of the life with this little boy. Barely minutes later, our world came shattering down around us as we were told our baby boy would likely not live past birth. He was initially diagnosed with holoprosencephaly (HPE), which is where the brain does not split into 2 hemispheres. There are varying severities of HPE, and they couldn’t tell if his condition was moderate or very severe.

The next week was a blur of tests, scans, and appointments to try to get a better picture of what Elliott’s development looked like. After MRI results showed that the initial diagnosis of holoprosencephaly was incorrect, we began to hope that Elliott might get to come home with us after all. But even though he didn’t have HPE, he still showed diminished brain growth, an underdeveloped facial midline, small or missing eyes, and a narrowed breathing passage. There was hope for him, but we knew life would look much different than we had initially imagined.

The advice from our medical team for the weeks and months after those results was “just wait and see”. So that’s exactly what we did. Below the shoulders, Elliott showed no additional concerns so over the next 4 months, he continued to grow like normal. He was content in Miranda’s belly, which was such a special blessing. The time we got to spend with him in utero was precious. We went on trips and family vacations, we set up his nursery, and we celebrated him with family and friends.

At 37 and a half weeks, we went in for a normal appointment and were told that Elliott had some non-reassuring heart rate decelerations so we should go ahead with our planned c-section that day. We were so nervous but also excited to know we were about to meet our son! The c-section went well, and Elliott came out with a few squeaks, a sound that we will cherish for the rest of our lives.

On September 8, 2022, we got to say Happy Birthday Elliott! He was immediately whisked away by the NICU team to start assessing his condition. He quickly got a breathing tube and was treated for hypoglycemia. Now that Elliott was earth-side with us, doctors and specialists could start evaluating his conditions to see how he had grown since the 20 week anatomy scan.

The first night, it became apparent that Elliott was having seizures, so he was started on multiple seizure medications as well as an EEG “helmet” to assess his brain activity. The next few days were a blur of specialist consultations and testing, all while steadily increasing his seizure medication as his seizures continued to break through. He was finally able to get an MRI which showed what we had feared – Elliott’s brain had not developed much (if any) past the 20 week anatomy scan.

His neurologist concluded that he would likely never be able to have any kind of meaningful communication. His seizures were also likely related to the lack of brain growth. This news broke us down all over again because we had hoped that Elliott would show progress after growing so well in Miranda’s belly. Instead, we were faced with the gut-wrenching fact that Elliott’s body was just not made for this earth, and we couldn’t change that.

We decided that we wanted to get to know Elliott in the way that he was created, so over the next few days we slowly weaned him off of the seizure medications that had kept him comatose. He was subjected to less tests and pricks, and we started to see him move on his own. He no longer needed his EEG helmet so as that came off, we got to give him his first bath. With the support of an amazing care team at our hospital, we were able to do a bunch of memory making activities with him.

After 8 days of being with us in the NICU, Elliott had finally shed all of his extra support systems, except for his breathing tube. We took a special trip outside to the garden, accompanied by multiples nurses and even a security escort. We sat as a family on a park bench and basked in the sunshine. We thanked God for trusting us to be Elliott’s parents and cherished this time that we got to know him here on earth. Later that afternoon, Elliott’s breathing tube was removed and we got to spend time as family for another 5 hours before he passed away in our arms.

Abel Speaks is a 501(c)3 nonprofit organization and all donations are tax-deductible.

2001 W Plano Pkwy, Suite 3405 Plano, TX 75075

(972) 688-6405