Jade Gomez Jade Lorraine Gomez

First post: May 4, 2022 Latest post: Aug 24, 2022
Jade Lorraine was born April 3, 2022 and was the most beautiful baby we had ever seen. She only weighed a little over 4lbs so she was automatically brought to the NICU. The only thing that was concerning when she was first born was that she had clouding in her eyes. As she spent time in the NICU the ophthalmologist who visited her there suggested she get moved to Children’s Hospital of Philadelphia (CHOP) to get more specialized care for her eyes. While at CHOP, they performed head ultrasounds, an MRI and a CT scan where they found evidence of seizures. When they looked deeper they found that she had severe bleeding in her brain that impacted the white matter. The doctors shared that the damage would be “irreversible”. They have done 2 neurosurgeries to drain the fluid from her head. They also have run so many tests to try to figure out the underlying cause of the bleeding. She had all sorts of teams of doctors following her case, they even had a genetics team studying mine and Ricky’s genetics to see if there was a cause there.

Eventually the results of the genetics sequencing came in and they found that Jade inherited a copy of an extremely rare mutation that both Ricky and I carry. It’s called Protein C deficiency. Protein C helps blood flow and when it is lacking blood clots can happen easily. Jade had clots in her brain that caused the vessels to break and therefore bleed. While it was a relief to know the cause of the bleeding and begin treating her Protein C deficiency, there is still concern for the damage that was done to her brain from the bleeding. Another symptom of this deficiency is that her eyes are clouded and some of the parts inside her eyes are squished together. She will also be having eye surgery later this summer to hopefully correct the anatomy and God-willing, give her some sight.

It’s now been over a month in the hospital and each day brings new updates- sometimes hopeful and sometimes not. As her mom, there is nothing I want more than for her to be healthy and for us to take her home and love her and care for her. Since I can’t do that right now I realize that what I can do is even from her earliest days, be with her, pray for her and remind her that God is with her.

Ricky and I are trusting God to do a great work in her life. We are so thankful for the community that has come around us and supported us through prayer, food, and grub hub gift cards. There is a long road ahead as we figure out all that Jade needs but it means the world to us to not feel like we are walking this alone. We are trusting God to do a great work in our daughter’s life. We hope her story is a testament to God’s faithfulness.
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