Catherine “Cate” and Charlotte “Charlie” were born in July of 2012 at 29 weeks gestation or 3 months early. They had what is called twin to twin transfusion syndrome. Basically Cate was getting too much food and Charlie was not getting enough. Unfortunately too many identical twins end up with this problem and not everyone is as blessed as we were. The doctor caught it in time and during a regular checkup we walked straight to the hospital and didn’t leave until after they were born. Cate was 3lbs 11oz and Charlie was 1lb 15oz at birth. Charlie was fairly healthy during her 8 weeks in the neonatal intensive care unit (NICU) but Cate was not so fortunate. The first 3 days of Cate’s life were touch and go and we thought that we might lose her. Having the doctor look at you and tell you that your child may not make it is something that I would never want anyone to experience. But Cate is a fighter! After being intubated and having two chest tubes put in she came through and began to improve. On day 3 of her life we learned that she had a brain bleed and damage. Before she left the NICU at 10 weeks of age we got her official diagnoses of a Grade IV bilateral bleed with PVL (periventricular leukamoalacia). Finally, 74 days after our girls were born we had them both home. It was wonderful! Then the doctor appointments and work began.
Because the girls were premature, in fact they would call Charlie a “micropremie”, we had to be very cautious with their health. The following 6 months after bringing them home we had regular appointments at the pediatrician, neonatal doctor, eye doctor, plastic surgeon, cardiologist, neurosurgery, neurologist, acupuncture, and physical therapy. Doctor appointments have slowed down now that they are older but we are still visiting most of these doctors.
Charlie has been progressing very well. According to the doctors and her parents she is a very healthy 20 month old. Although she is small she is very strong. Right now she weighs about 19 lbs. She was a little behind developmentally with regards to her mobility and strength and was is in physical therapy once a week. Now she has caught up with her age or ahead. Charlie is walking, climbing, talking, singing, and into everything. She is a joy to everyone around her and we love her so much!
Cate is doing well considering her brain injury. The neurologist diagnosed her with cerebral palsy (CP) at 5 months of age. We have since learned that CP is a syndrome without a good definition. It can mean so many things so we do not typically use this term. She is brain injured or hurt. She does have extra tone in her upper body and her hips. This has limited her mobility and one of the things we are working on most. Another noticeable effect of the brain injury was her vision delay. She was diagnosed with cortical visual impairment. Basically this means that her eyes are healthy but the connection in her brain has been damaged. In March of 2013 Cate had her first seizure and was diagnosed with infantile spasms. She continued to have seizures daily for 5 months. Cate is not on seizure medication and has had 2 seizures in the past 10 months. I would like to talk more about her seizures in a future post. Cate is a beautiful girl with a very strong will. She is currently about 22 lbs.
With the help of our family we found out about The Institutes for the Achievement of Human Potential (aka the Institutes) in Philadelphia, PA. I would encourage anyone with children, planning on having children, or working with children to look at their website, www.iahp.org. They are a non-profit group that has been studying and working with brain injured and well children for almost 60 years. They have learned through various methods how to help hurt children and improve their symptoms dramatically. They focus on healing the brain instead of treating the symptoms. Their program consists of teaching the parents how to teach their children. Our life has changed dramatically since finding the Institutes.
I want to stress that I am NOT a doctor, therapist, or a writer. I am a mother who was looking for some help for my child and now want to share our story to help other families in a similar situation.