American Action Fund for Blind Children and Adults
Future Reflections Fall 2015 EARLY CHILDHOOD
by Marion Masek
From the Editor: For many blind children, learning the skills of blindness is complicated by a variety of additional disabilities and medical conditions. In this article Marion Masek recounts the long journey her family traveled during her son Makkyle’s first years of life.
In order to tell Makkyle’s story, I want to begin by introducing our whole family. I am Marion Masek, and my husband is Miguel Mendez. We have an amazingly smart daughter, Makala Mendez, who is seven. Right now she wants to be a geologist and work with really cool rocks. Our son, Makkyle Mendez, is four years old.
During my pregnancy with Makkyle, I had no proof that anything was wrong. But at around five months I started getting headaches. I had a mother's intuition that something wasn't right, and I thought I was going to lose the baby. I kept telling my doctor that something was wrong, but the ultrasound showed nothing.
On December 17, 2010, at 6:00 a.m., I was scheduled to have a C-section because I had had one with my daughter. The C-section went well; the baby even gave the doctor a nice shower coming into the world! When they checked him out to make sure everything was all right, however, they noticed that his eyes were swollen shut. They told us he needed to be propped up to help the swelling come down. So Makkyle spent most of his first day out of the room, propped up in the nursery.
When the swelling didn't come down, the doctors checked Makkyle's tear ducts, and then went on to do a thorough examination of all his organs. They found that he had a micro penis, and they thought he had a heart and liver problem. They could not get his eyes to open.
Makkyle was born at a small hospital in rural Illinois. He got lots of attention there because his situation was so unusual. I believe five pediatricians came by to look at him that first day. They wanted to transfer him to another hospital that afternoon, but because I was recovering from the C-section they wouldn't release me or transfer me with him. We decided as a family to leave Makkyle with us for the time being. That was the best decision for our family. His problems were not life-threatening, so we felt there was no great rush.
Through all of this I heard one thing after another from the doctors. First they told us they didn't think anything was wrong, that the swelling of Makkyle's eyes would go away. Then they told us he had a condition called CHARGE syndrome. Then they said that CHARGE syndrome was the wrong diagnosis and told us we should transfer to a larger hospital.
Once I was ready to be discharged, we agreed to have Makkyle transferred. We had our choice of several hospitals, and we picked Loyola in Chicago. The Ronald McDonald House was right next to it, and we had family nearby. Once we got to Loyola, the real rollercoaster began! It felt like we were seen by pretty much every doctor in the place--heart, liver, back, and eye doctors, and even a genealogist. We all had blood drawn.
Finally they told us that Makkyle has bilateral anophthalmia, which means he has no eyes in either socket. They told us this condition is caused by a genetic mutation carried by one of the parents. We were never tested to see which of us carries it; we don't care or want to know.
We were with Makkyle in the neonatal intensive care unit (NICU) for five days. They did MRIs (magnetic resonance imaging tests) and scanned his heart and liver to make sure there were no defects. He has a dimple on his back, so they scanned his back because they thought he might have a hole in his spine. It was a super emotional time for us!
After two days at the hospital my husband had to leave and go back to work. Makkyle and I finally got to go home on December 23, the day before Christmas Eve. I host Christmas Eve at our house every year, and I was home in time for that important holiday.
After we left the hospital, we still had almost weekly visits to doctors. Many of them were up at Loyola, which is more than a two-hour drive without traffic. We saw an eye prosthetic specialist who made Makkyle look as though he had teeth coming out of his eyes. (He had black prosthetics at Halloween--that was fun!) We saw a hormone doctor; she told us that Makkyle doesn't have enough testosterone in his system. That is why he has the micro penis. He went through three rounds of testosterone shots, and he will have to take testosterone for the rest of his life when he hits puberty.
For six months Makkyle did not gain weight, so we had to see a nutritionist and a gastroenterologist. We were told that our son could eat anything we could get him to eat, and that he must be strictly on PediaSure for liquids--as much PediaSure as we could get him to drink. We also saw many therapists, including a vision therapist and a physical therapist.
When Makkyle was a year old, we discovered he was having a hard time swallowing. We knew that he was tongue-tied, which means that his tongue was too tightly connected to his lower jaw. We decided to have a minor surgery performed that would untie his tongue. After the surgery he started using a Sippy Cup, but we found he didn't like it. He still was not sitting on his own, but he was starting to roll around a little. Not much crawling was happening.
At this time we were still going to the prosthetic specialist every other week. Makkyle was fitted with plastic conformers that were supposed to expand the bones around his eye sockets. Finally we decided that he needed to see an eye surgeon. We wanted to find out if we should continue with the conformers or use something called hydrogels. Hydrogels are balls or half globes somewhat like the kids' toys that grow when you put them in water. They expand the whole eye socket, not just the bone around it. If we went with the hydrogel, we also had to decide if we wanted Makkyle to have a fat graft to help fill his eye sockets. This decision called for yet another MRI.
For about two months the doctor would fasten Makkyle's eyes shut with a kind of glue to hold the hydrogels in place. Sometimes the hydrogels came out even before we got home, due to the fact that his eyelids were too small. We had to make the decision to stitch his eyelids closed to keep the hydrogels in place.
As parents we felt we needed to help Makkyle look as normal as possible to give him the best chance in life. We didn't want him to be bullied or looked down upon because of his unusual appearance. So we opted for surgery to have the hydrogels stitched into place. The stitches would pop out, and sometimes we had to see our son in pain. But with all the pain he endured, he kept a smiling face. His upbeat approach to life helped all of us keep our spirits up.
After the stitches were put in about nine times, there was enough space in the eye socket to insert the fat graft. The doctors took some fat from Makkyle's buttocks and put it in his eye. (Some day he can make up a cool story about that scar on his backside!) They placed the fat in his eye sockets and put conformers in on top. They had to stitch the eyelids closed for a while again until the fat grafts were healed in place, but we think we made the right decision. Finally Makkyle has better structural growth in his face.
By the time Makkyle was two, we were growing more concerned about his speech and feeding. He seemed to understand nearly everything we said to him, but he was not talking well, and he still had trouble eating. Our speech and feeding therapist sent him to have a cookie test, or modified barium swallow. In this test, X-rays are taken while the child swallows foods of various thicknesses, in an effort to understand any swallowing issues. Based on the test results, we were told to thicken all liquids for Makkyle to the consistency of honey. He could have no foods that excrete liquids, because he tended to aspirate liquids into his lungs.
Makkyle also had a hard time learning to walk, and we were told that he has cerebral palsy. We had to get a wheelchair, a gait trainer, and a bath chair so we could help him move and give him baths safely. After a while he graduated from the gait trainer to a walker and started to cruise around, holding onto the couch. That was exciting progress!
By now Makkyle was almost three, and it was time to get ready for preschool. We prepared for him to attend school full time three days a week. Right away we ran into a problem. In order to attend the program that best suited his needs, Makkyle would have to spend an hour on the bus twice a day. His IEP stated that he would have a monitor to accompany him on the long ride each way. However, the school was not willing to provide a monitor, even though it was required according to his IEP. We had to fight the school before they finally followed the plan we had all agreed upon.
On a Friday afternoon at the end of March, I took Makkyle for what had become our routine cookie test. Usually this test took about fifteen minutes. This time he failed a series of tests, with deep aspirations into his lungs. They called our GI doctor and told me to take Makkyle down to Admitting. We were admitted to the hospital within an hour of the test results. They had to entube Makkyle through his nose for the weekend. On Tuesday we were told that our only option was to have another surgery, this time to have a g-tube placed.
We were in the hospital for ten days due to small complications of the surgery. When we went home we were only allowed to feed Makkyle Pediasure through the g-tube. He could take nothing by mouth. I felt so bad taking all his food away!
After a few weeks Makkyle began retching constantly day and night, to the point that he was choking on any secretions in his mouth. They admitted him to the hospital and ran a series of tests, but they found nothing wrong. They were going to send us home with him still retching, but I said no. Finally they prescribed a medication that helped with his retching, and it also lessened the symptoms of his cerebral palsy.
That summer Makkyle started swimming therapy. He loves being in the water, which enables him to move with much greater freedom. We have also worked on his feeding. He still cannot have liquids, but he can eat a number of solid foods. Last July he had a seizure, and an EEG (electroencephalogram) showed some abnormalities in the back of his brain. Since it was his first seizure as far as we know, we decided not to put him on seizure meds.
Recently Makkyle got a Smart Brailler, and he loves to play on it. He now has his first cane. He was learning to hold his cane in one hand while he holds my hand with the other. Unfortunately, he has had some further medical setbacks, and right now he is back to using a walker again.
Sometimes people ask me how we manage to keep it together when we have run into so many problems. I always tell them that we actually lead a normal life. It may not seem normal to others, but it is normal to us.
Makkyle loves music, and one of our favorite activities is singing together. He can't say all of the words, but he sings along with me, "My-my-my!" Through all of his ordeals with doctors and treatments, Makkyle remains a cheerful, good-natured little boy. He is determined to thrive, whatever happens. We have had many struggles and followed paths we never imagined, but Makkyle shows us that we're on the right track.