RECEIVING THE DIAGNOSIS
When I first received a diagnosis for my daughter, I was told she had semilobar holoprosencephaly and lissencephaly. The diagnosis was made around 20 weeks’ gestation by fetal MRI, just one week after finding out that there was “something” wrong with Kaya, and I was told that both conditions have a poor prognosis.
Following the diagnosis, and since I live in Texas, I was told that I had the option to go to Colorado or New Mexico for a late term abortion. I declined the option to terminate. I loved my daughter dearly already, and I had given her a name, Kaya. I chose to live with whatever outcome we may receive after her birth.
The next 19 weeks felt long. We saw a specialist for sonograms to monitor her growth every 3-4 weeks for the remainder of my pregnancy. I had an amniocentesis test done to find out if the diagnosis was a genetic disorder. The test results showed no genetic indicators.
At every appointment, I was told that my daughter had a poor prognosis and that I should expect my daughter to be born with very little quality of life. I was told that she would be put on breathing and feeding machines to sustain her life. I was told that for whatever life she may live, she would basically be like a vegetable.
MEETING MY DAUGHTER
Around 30 weeks, I went to have a consult with the neonatal intensive care unit (NICU) to prepare for Kaya's birth. I was given the option of palliative (comfort) care or for NICU intervention for whatever Kaya may need to help keep her alive. I choose palliative care as I did not want to prolong any suffering Kaya may have had after she was born. Our doctors were extremely understanding, and they told me I could change that decision at any given time.
A few more weeks went by, and my amniotic fluid started to measure high. As a result, I was induced on March 7th, 2017 at 37 week’s gestation. It was one of the longest days of my life. I went to the hospital and was prepped for birth. I labored for 8 hours before my daughter was born.
Kaya was born at 5:44pm on March 7, 2017, weighing 5 pounds, 8 ounces. She was born screaming, and it was the most beautiful noise I have ever heard. She was tiny, and her head was small like a baby doll’s, but she was breathing and beautiful.
Following her birth, she was monitored by the NICU team, and her vitals were good. They laid her on my chest, and I held her for hours. Kaya amazed us all and breastfed within her first few hours of life. Luckily, she needed no intervention from the NICU.
I was able to keep her with me the entire five days we were in the hospital. I requested that Kaya have a head ultrasound and an MRI at three days old since she did in fact live past birth and was beating all the odds against her. These scans confirmed the diagnoses of semilobar holoprosencephaly and lissencephaly.
GOING HOME FROM THE HOSPITAL
We left the hospital on that fifth day, and we were sent home with support from hospice. We were prepared for anything that might happen to her and for any sudden changes. The next few months were so tough, and it was always at the front of my mind that something was going to happen to Kaya.
I had questioned her diagnosis from the beginning, and since Kaya had none of the typical symptoms of her diagnosis, I continued to search for answers. We are so fortunate that here in Dallas, Texas we have Scottish Rite Children’s Hospital as they actually have the head research team for holoprosencephaly.
When Kaya was two months old, I sent the team at Scottish Rite the results from the MRI we had done when she was three days old. It took five months to receive any information back. When Kaya was seven months old, I received a call from the head of the research clinic, and they confirmed what I suspected: Kaya did not have holoprosencephaly.
Kaya was officially diagnosed with lissencephaly and agenesis of the corpus callosum. This was good news, as holoprosencephaly can have much more severe effects on children.
LIFE WITH KAYA
Kaya has luckily never needed much medical equipment or medicines like breathing or feeding tubes though we struggle with many things. Today, at 20 months, Kaya is a happy, healthy, giggly little girl. She lights up when she sees me or her big sister, Kyrie. Kaya is still itty bitty, barely weighing 16 pounds at almost two years old.
Kaya cannot physically do anything on her own. She cannot sit up, crawl, walk, hold a bottle, or feed herself. She can barely roll over. She cannot reach for toys. Her vision is impaired, and she has infantile spasm seizures.
We have attended 3-5 therapy sessions per week since she was six months old. Right now, we do physical, occupational, vision, specialized service, feeding, and speech therapy. My life has drastically changed to care for this little angel, and in multiple ways, she has made me a better mother and woman. I now work from home to be her 24/7 caretaker.
EMBRACING THE TIME WE HAVE
After the first few months of having Kaya, I was told to not expect her to live past the age of one. She is now almost to two, which is a miracle in and of itself. Unfortunately, lissencephaly is such a rare diagnosis that there is not enough research to give exact prognosis. Most of these children will not live past the age of ten, but I have been told to expect five years or less.
I used to get very emotional when seeing other children who are younger than Kaya or around her same age doing things that she cannot. Now, I am grateful for all that she can do and all the odds she has defied. Kaya is extremely special because she will never experience the hate or the evil in this world. She is the purest soul I know, and she will only experience love and happiness each moment that she may have on this earth. As a parent, that is all I could ask for.
I do worry now because Kaya has stopped growing, no matter how much food she consumes. She has literally gained zero pounds in over a year, and she has only grown a couple of inches. At 20 months old, Kaya is about the size of six to nine month old. So, I do fear that our days are numbered, but I do not dwell on it. We live every day to the fullest and cherish every moment we have. Kaya has been an absolute blessing to anyone who has known her.
It is not an easy life that we live, but it is a life that I am so grateful for. I have gained so much wisdom and understanding from our experience about this thing we call life.