Zorielys Journey to Natural Hearing
I would like to introduce you to Zorielys. She is 5 years old and full of excitement. The day I found out I was pregnant it was so exciting for our family. I went to the doctors right away as I suffer from a condition called Lupus and needed to make sure that everything was going good.
The day I went in for my first checkup they confirmed through blood test that I for sure was pregnant, my HCG levels were going up which is a good thing. Well they had me come back at 6 weeks for the first ultrasound, and that is when we had gotten the devastating news that there was no baby. So just to make sure they had me come back in two days to recheck. Again, no baby, they named it as a Blighted Ovum (sack but no baby). They recommended a DNC or pass naturally at home.
They also recommended I start all my medication for my Lupus as it can flare after miscarriage. So, I follow doctors’ orders. I decided to let it pass naturally at home as I have heard a DNC can be horrific. Well about almost two months’ past. I called my doctors to let them know I was not feeling well. They said that I most likely miscarried already to come into the office for a checkup. Sure, enough when they did the ultrasound the lady said you’re not going to miscarry you have a baby in there with a healthy heart beat.
I was in tears of excitement but the first thing that came out of my mouth was what about the medication!? They promised me that everything would be ok throughout the whole pregnancy. At every sonogram, they said everything looks good. Well at 30 weeks I was admitted to women’s hospital with some spotting that became into heave bleeding. I thought I had lost her. They took me in for an Emergency C-Section, my baby girl only weigh 3 pounds. They let me see her for 2 seconds and took her away. They didn't let me see her completely until the next day.
That’s when I found out she was born with multiple issues. The doctor came in to explain her conditions: Bilateral Coloboma (large blind spots), Choanal atresia (surgery at 6 months old) Thumb Hypoplasia (surgery at 1 years old), Bilateral Microtia/Atresia which is where the ear canal is not formed and neither is the outer ear. Meaning she cannot hear. As the months passed by we suffered and would ask why our little one was born with so many birth defects. They did all the genetic testing and came back negative! Doctors concluded that it was the medication that affected her as she was still developing the first trimester. There is no reversal on her conditions just surgeries and equipment. She was finally fitted with a BAHA head band to help transmit hearing to start her speech at nine months of age. I had her in Therapy for 3 years now. I have done so much research since she was born to find the best and most experience doctors to help her out.
I found a doctor from Texas who only Specializes inPediatric Microtia surgery. He would not start surgery until she is closer to the age of 6. The time has come, she will be 6 in November. He will begin her surgeries in August of this year. He will be working on fixing her outer ear and they will also work on opening her ear canals, so she can have natural better hearing. This is a four-step surgery meaning must travel back and forth for them for about 4 months. This is important for my little one, as it is going to help her emotionally and physically. She will get the gift of natural hearing.
We are asking for any help please with Medical, traveling, and other expenses. I must quit my job as she is going to need 24/7 after care plus homeschool for Kindergarten. This is going to hurt us financially. Ask yourself as a parent, would you do the same for your child? Please, please help us make this journey come true for my baby girl. Anything will help please. Thank you all for your consideration. Here is a link to see more information on the procedure http://microtia.net/meet-dr-bonilla/
Zorielys surgeries are being postponed until January due to her starting school in August. We do not want it to affect her in the beginning of the school year, as she will be taking some time off for her surgeries.