Taytum Jackson is a four year old KCEOC LCCDC Head Start student. She has fought and won many battles in her short four years of life. On 12/8/2015 Taytum decided to prove everyone wrong, and conquer a task that doctors said would never happen. She received news shoes in the mail, put them on, stood up, walked for the first time in her life, and made another stride in her journey.
Taytums mother, Candace Jackson, has shared her story:
“Taytum Jackson was born via emergency C-section on December 2, 2011 at 27 weeks and three days. She weighed one pound and nine ounces and was 11.9 inches long. Her early delivery was because of complications from a rare type of twin pregnancy called Monoamniotic-Monochorionic (This only happens in 1% of all twin pregnancies). She and her twin were only given a 50% chance of survival because of cord entanglement and cord compression. There was no separating membrane between the babies like there should be, they could physically touch each other. At 17 weeks gestation we went in for a routine ultrasound and was told that Taytum's sister, Teagan, no longer had a heartbeat. After receiving the devastating news, the doctors told us to prepare ourselves because within the following days we would lose Taytum also, due to her twin passing. That was the worst day of mine and my husband’s lives!
Days passed, and then weeks, and Taytum held on strong and still had a heartbeat. She continued to grow and doctors were astonished. They just couldn't explain why she was still growing. A month after Taytum's twin passed the doctors began to realize that Taytum wasn't giving up. They told us that since Taytum had continued to grow, and had a strong heart rate, the odds of survival for her had increased, but she would more than likely have some type of brain damage when she was born. The doctor explained during Taytum's twin passing she lost oxygen to her brain, and at the moment they really couldn't tell the amount of damage. But, they would know more once she was born. I honestly don't think that news fazed us very much. We were just happy to hear that she had a chance.
At 24 weeks I went to have my weekly ultrasound when we encountered another problem. It appeared I had no amniotic fluid around Taytum. This was not good, and my doctors decided to admit me to UK hospital to keep a close eye on Taytum. They put her on continuous NST monitoring and put me on lots of IV fluids. After a while the fluid returned to normal levels, but Taytum had started to show signs of distress during the monitoring sessions. For the following week they started to keep a closer eye on her. On the night she was born by emergency C-section her heart rate dropped to the 60’s and did not recover and they rushed me back to the operating room. She was born wrapped in her sister’s umbilical cord, and had her own cord wrapped around her neck twice. Had I not been in the hospital, and on the monitors, she would not be alive today.
Taytum was born very sick, but miraculously with no brain damage. She could not breathe on her own because her lungs were so underdeveloped, and she also contracted an infection while being in the womb with her sister who passed because I had to carry both of them until delivery due to them sharing the same amniotic sac. Once in the NICU she was diagnosed with a PDA, which was a hole in her heart, chronic lung disease, and pulmonary hypertension. She was too sick to have surgery to close the hole in her heart, and it was causing her to have high pressures in her heart which was only making her more sick. There was nothing the doctors could do for fear of losing her. We also noticed that Taytum's legs looked somewhat deformed, but because of her being so sick it was not a priority at the moment to look further into it. After almost five months in the NICU, and no treatment really helping, Taytum was sent home on hospice care. The doctor told us there wasn't anything else they could do for her. But I just couldn't come to terms with that. My gut instinct told me that she was going to be okay. My husband and I kept the faith and took her home hoping she would get better.
When finally home we saw a peace come over Taytum. It was almost like she knew she was home and could rest and grow strength. We went to our first doctor’s appointment and they were amazed at the progress she made. Months passed and she kept getting better. After a while she no longer needed her oxygen or heart monitor. At 13 months she was discharged from Hospice and went on to have PDA closure surgery at two years old.
Once she became more stable we were referred to the Shriner’s Children Hospital in Lexington. It is there she was diagnosed with bilateral club feet and Arthrogryposis Multiplex Congenita (AMC for short). AMC is a condition that causes many joints to be stiff and crooked at birth. This restricts normal range of motion because of joint contractures. This condition happens before birth and can affect all joints. Taytum is affected in her hips, knees and ankles/feet. The doctor didn't give us much hope she would ever be able to stand or walk. Because of her contractures her knees are fixed to a certain point, she can’t straighten her legs, and her feet are almost fused in one position. Taytum had to undergo stretching, range of motion exercises, splinting, serial casting, tendon surgery, physical therapy, and bracing which helped get her feet in the right position. Even though this has helped, Taytums legs aren't completely straight, and her feet do not rest flat on the ground. It looks as if she stands on her tip toes, even in her braces.
We recently met with a new orthopedist because we were having trouble getting new braces through her normal orthopedist. The new orthopedist was amazing! He is the only person we have met with so far that seemed like he really cared about Taytum's situation and her independence. He wanted to help her and we were thrilled! With no hesitation he fitted Taytum for brand new KAFO braces (Knee-Ankle-Foot Orthosis), and then suggested we order her a special type of shoe that he could put a wedge on so she felt supported and could possibly make it easier for her to keep her balance while using her posterior walker. It took us a few weeks to receive the new braces and then yesterday (12/8/2015) we received the shoes through the mail. Of course, she was excited and wanted to try them on. Within minutes she was standing on her own. We couldn't believe it, and she was tickled to death. She just couldn't believe she was standing without having to hold on to something. Since she could keep her balance so well my husband and I decided to see if she would take a few steps, and to our amazement she took off, she didn't even hesitate. It blew our minds, and she couldn't do anything but laugh. Taytum's little brother who is two years old knew that sissy did something amazing too. He ran over to me grab my face and said, "Mom! Sissy did it! Her did it mom!"
Deep down I always had a feeling that she would walk. She never ceases to prove anyone wrong tells her she can’t do something. She is such a blessing to us, and we feel so honored to be a part of her life and journey. She has taught us so much in her four years of life. We have learned to never take things for granted and to never give up hope. She is such an inspiration not only to us, but too many other people. She is such a strong little girl, and I must say she is my biggest hero. “
KCEOC would like to thank Candace for sharing this inspirational story, and allowing KCEOC and the community to be part of her journey.