Your Stories | Sylvia

May 9, 2016   Opinion

The Laurita Spina Bifida Project | Source

Original Post on Facebook
by Sylvia Almestica
North Carolina, United States—When we think of having children, the joys about pregnancy, and the joys of our children being born and living fulfilling lives is a natural reaction. We never think about our unborn children being born with disabilities, diseases or deformities. It seems so far-fetched or not our reality but, maybe someone other than yourself.

Hi! My name is Sylvia Almestica, and my son Kaleb was born with spina bifida, hydrocephalus , and Chiari II Malformation. He is my miracle, my champion, my strength provider and the strongest-willed child of my 3 boys.

When my husband and I found out we were pregnant, we were shocked. For one thing I, was going to be turning 40 that year and already had a 21-year-old son in college. My husband had a teenage daughter and here, to our surprise, we are having identical twin boys. If things couldn't get stranger, the boys were Mono Mono twins meaning they share the same amnions, chorions and placenta. This happens in 1 out of 10,000 births which is very rare, so we knew we had something special going on. The first ultrasound was amazing.

The boys were huddled across each other, one laying over his brother’s chest, holding on to each other for dear life. Unlike my first pregnancy, I was extremely sick, vomiting all day. I couldn't keep any food down and stayed nauseated most of the day. I felt extremely tired quite fast, but figured things would change. I was excited about the 18 week-ultrasound, which my father would attend with me, since my husband Michael couldn't make it. I figured, in and out, and get some 3-D pictures to take home would be great.
After the technician left, I remember a small, skinny, bald-headed doctor coming in, asking if he could take another look, so he did. He started to tell me about a lemon-shape he was seeing on one of the boys and started talking about all these confusing words, and my head started spinning. I remember leaving the room, walking out of the hospital, not sure of what I just heard or understood. I remember calling my husband crying and screaming, “something is wrong with one of the boys.”
I was devastated. I felt angry. I felt like a failure, traumatized and crushed with distress. I felt as if I had made this happen and felt ashamed that I couldn't produce a healthy child. I had failed. After coming home and sleeping, Googling and researching this thing called “SPINA BIFIDA,” having discussions with family, crying, and the family crying, I was exhausted. I couldn't hear my father’s wisdom when he said, “it doesn't matter; he is fine.”

We went to appointment after appointment, conversing with neurosurgeons, spina bifida experts, urologists, bone doctors— you name it. I wanted to talk to everyone and find out what was in store for my twins’ future. Doctors discussed terminating the fetus, but taking the risk of losing the second fetus. We talked about having the surgery in-utero, but it was ruled out as too dangerous for the second fetus. So, either way, if we terminated or had the surgery, one of the boys might not have made it.

What was I to do? I did not want to have a child that would be miserable, would be in constant pain, could not walk or would have to have machines keeping him alive. There was so much negativity surrounding the situation that I was totally distraught and couldn't see the forest from the trees…

I contacted Laurita Tellado and asked her about her situation, and to my surprise, she answered me back, and one thing I remember her saying was how grateful she was to have the opportunity to have been born! That statement changed the way I looked at this little child with such hurdles and obstacles ahead of him, and decided to start talking with God... not shaming or angrily but really listening to GOD. I decided that I was going to go to sleep one evening, and when I woke up, I knew exactly what my decision was going to be, and my husband said, “whatever it is, I am behind you 100%.”

The next morning, KALEB was named and he was a force to be reckoned with! His brother at his side would keep him safe, and his name was Kaden. The twins would be born, and that was FINAL. After that night, I didn't bother myself anymore about what might be. I was preparing for life and the commitment ahead.

During the whole time in utero, Kaleb stayed down in the side pocket of my hip, his back shielded so we never could get a good view of his lesion. We knew it was relatively low, and that was a promising sign for less complications. I was told he probably would be “wheelchair-bound,” and never would walk unassisted.

But with every kick of his ankles and feet, I prayed it would not be too severe.

On November 1st, 2013, I went in to an ultrasound, since I was having them every other day now, hoping we could make it to a full term. I hoped to attend my birthday party that evening as well when the other twin decided to stop breathing, causing distress to both boys. The doctors told me, no birthday cake for me— just expect two baby boys this year on my 40th birthday! Are you serious? On my birthday!!

That evening, we went into emergency C-section, and we delivered Baby Kaleb and Baby Kaden, each about 4.6 ounces— very small, but both breathing and doing well.

Kaleb was rushed out right away, but the doctor leaned over and said the lesion had a very small tissue layering over the site, and was smaller than predicted. He was rushed into surgery that early morning and shunted due to the cerebrospinal fluid not going totally down. I wished he didn't have to have that shunt, but we knew it may have to be placed after he was born. My father didn't leave his side. My husband was rotating back and forth until I could finally get down to see him. Three whole days later, I finally met Kaleb and was able to breastfeed him, and at that time I knew my child was perfect!

He had L-4,L-5 lesion with a foot deformity, and the doctors didn't think at that time that he would walk unassisted, but I was okay with that. In 9 days, Kaleb was being sent home, the first child at UNC NICU with spina bifida and hydrocephalus to go home so soon. I was nervous. Of course, Kaleb was guiding me the whole way. He slept more than his brother, ate less, he was less active, and I was afraid that my fears had come true that something was wrong with his brain. Kaleb developed just fine— all images were excellent and Kaleb seemed to be mild-mannered and content.

As his brother started to sit up, push up, and roll over, Kaleb didn't . But as Kaden started to walk very early, almost at 9 months, Kaleb was sitting up, rolling over and pushing himself forward. I was amazed at his accomplishments. I had physical therapy come once a week, developmental therapy coming by the age on 12 months, because I felt the sooner he can get assistance, the sooner he can strengthen his body to prepare for the future. Kaleb was given orthotics early, even when the ortho doctor felt it was too soon. He thought I was pushy! As Kaden started to walk, his brother was watching his every move, and before you knew it, Kaleb was standing up against walls, cabinets and couches, so I told the doctor again, “give me a walker!” He thought I was nuts, and told me, “it’s too soon, and he will not be ready.”

The next 3 months passed, and when we went back to the doctor, Kaleb was walking in on his own with his walker! That was at 18 months, right before his second birthday. I had promised my husband that our son would walk before his 2nd birthday, even if it was with assistance. Kaleb kept beating the odds and defying his diagnoses, because right before his birthday, he was walking on his own with orthotics on. That doctor finally said, “I will never tell a mom again what her child is not ready for!”

Kaleb is 2 years and 6 months old. He can walk with his orthotics, and short distances without them for pretty long distances. He is challenging himself every day. He has speech therapy, which they are terminating since his vocabulary is very large. His favorite words are, "where are you, iPad”, “Mom, come here,” and sometimes he even calls me “Dora” from the T.V. show!!! He loves to look at books, play with his iPad, loves trains, especially Thomas the Train, sings and speaks a little Spanish as well.

I hope both boys will be bilingual, since their dad is from St. Croix.

It has not been easy, and some days are challenging, because Kaleb’s needs are different. I am preparing him early to manage his bowels, because he has bladder and bowel incontinence, and am not sure what he can feel just yet, and how much. I fight urinary tract infections and severe constipation issues, which have landed him in the hospital a few times, fighting very bad infections. He had two brain surgeries in January of this year due to shunt malfunction and bleeding on the brain, which could have cost him to regress developmentally. but Kaleb doesn't give up. Kaleb is not settling for less, and neither will his family.

We fight spina bifida with all our might, so Kaleb goes to a Chinese herbalist, who has him on a good herbal regimen to fight infection, and helps his body absorb nutrients. He has acupuncture once a month, which is one main reason I believe he can walk unassisted. Kaleb sees a chiropractor once a month, along with all the rest.

I sometimes ask myself why— and then I answer myself— for KALEB!