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Maitong's Story:
Hello,
My name is Maitong Lee. I am currently 16 months old. I was born in October 2021 with a severe brain injury (Hypoxic-Ischemic Encephalopathy—HIE) at birth. I had a traumatic entrance into the world when my mom developed severe preeclampsia in her third trimester. One night, unexpectedly mommy developed severe abdominal pain that was unbearable. Mommy and daddy rushed to the ER in fear of not knowing what will happen to me. My mommy got an ultrasound ordered and the nurse started her exam. The dead look on the nurse's face instantly told mommy and daddy something was wrong. She was not able to find a heartbeat in her exam. My heart was decelerating, and my chances of surviving were diminishing by the second.
The nurse quickly called for a code blue and my mom was rushed for an emergency C-Section--I needed to be delivered asap. At delivery, I was born without a heartbeat and my brain was oxygen deprived. It took the doctors and nurses 15 minutes to resuscitate me. I was quickly put on oxygen support and transferred to Children’s Hospital to immediately start cooling therapy to avoid any further brain damage.
Daddy was put in a tough situation having to split time between visiting me and mommy as we were in various parts of town. Things were not looking good for me as my entire body was failing and fully dependent on medical support. Doctors broke the news to mommy and daddy that I had an extremely low chance of living. "I want to be upfront with you two as parents that it's not looking good for your daughter, how would you like us to proceed moving forward?" said the doctor. Mommy and daddy broke into tears in disbelief after hearing the news. They had an exceedingly difficult decision to make whether to pull the plug or continue medical treatment. As expected, mommy and daddy chose to not give up on me and let fate decide which way I was going.
I scratched and clawed my way as my body became healthier and started to trend in the right direction. Doctors were in shock with the way I was progressing, calling it a miracle. I was labeled as a true warrior fighting to stay alive. I was eventually discharged from the hospital and began my journey in life.
I had an MRI scan which showed severe damage throughout my whole brain. I was later diagnosed with spastic quadriplegia cerebral palsy, microcephaly, and craniosynostosis. Specifically, my craniosynostosis was confirmed as trigonocephaly, where the metopic suture had prematurely fused early.
Mommy knew something was not right and had been watching me since birth. She requested that the cranial facial team at Gillette Children's see us due to my forehead being uneven/unlevel. It also looked very pointy. Unfortunately, we did not get to see them until I was around 5-6 months old.
The craniofacial doctor confirmed that I had trigonocephaly and that my metopic suture had been fused early already. However, he was not sure if I needed surgery and wanted a second opinion from a neurosurgeon. Thankfully, a neurosurgeon was available that same day, and after reviewing my MRI scan, he recommended that surgery be needed. Due to my complex situation, mommy and daddy had consulted with other craniofacial teams from all over as well to see if they believed surgery was necessary.
After careful consideration, mommy and daddy have decided to go ahead with the surgery to give me the best possible outcome in life. They have decided to go with Dr. Jeffrey A. Fearon and his team, who are based in Dallas, TX. Dr. Fearon has extensive years of practice and has published many publications about his work and findings over the years of craniofacial surgery.
Today, I have global delays due to my brain injury, my trigonocephaly diagnosis can also be a causing factor in my growth and development. I currently cannot roll, I currently cannot sit, and I often get muscle stiffness in my body. Mommy and daddy have chiropractic sessions and physical therapy scheduled for me weekly. Under my condition, if trigonocephaly is not treated there could be pressure in the head which causes developmental delays, learning/behavioral problems, vision problems, and headaches.
Mommy left her teaching career and had since been a stay-at-home mom for over a year now taking care of me. This leaves daddy as the only person with income coming in to support our little family financially.
Furthermore, my health insurance is considered out of network. I have medical assistance, but Dr. Fearon and his team do not accept this kind of health insurance plan. I am asking for your donation to help me cover the cost of the surgery fee, added medical fees, traveling expenses, and accommodations while in Dallas, TX. In hopes that I can start my journey to have a better life, and future ahead of me.
We are looking to do the surgery before I turn 18 months, within 3 months before April/May, because by then the skull will be growing differently. Therefore, we are needing immediate funds to cover the first half of the fee to even schedule a surgery date. The last half of the fee must be paid 14 days before our surgery day upfront.
Any contribution no matter the amount is appreciated and will help give me the best possible outcome in life.
"Please give me a chance".
Kindest regards,
Maitong & Family
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