Mya Green's Surgery
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When we found out we were pregnant with Mya, we imagined all the things we would do with her and what her life would be like. We could have never imagined the road that we were about to embark upon. When Mya was four days old, she was diagnosed with a genetic condition called Deletion 22q11.2, which is also referred to as DiGeorge Syndrome and VCFS at times. This syndrome means that part of the 22nd chromosome is missing. It has the ability to affect any and all parts of the body. In Mya's case, it has effected every part of her body in one way or another.
Mya has never been one for letting things stay calm for too long. When she was born, she needed open heart surgery to repair her four heart defects. I thought that was the worst it could get, how could it get worse than handing over your 4-day-old child to a surgical team that had to stop her heart in order to fix it? While healing from the surgery she had to learn to eat as she had only received food by tubes up to that point. Thankfully, she learned to nurse after about two weeks of eating therapy. Once she was able to come home, we struggled to manage her acid reflux; it took years to get her at a dosage that would keep it under control. Even once we found the right dosage, she would still have episodes while she was sleeping where she could not get her breath due to the acid going up her throat. One night we almost had to call the emergency squad, as she was turning purple because she was unable to take a breath.
When she started eating solid foods, the constipation started. This also took years to find a good balance. Even now at 6 years old, we still have to adjust her medications at times. During a procedure to investigate the cause of her reflux and constipation, the doctors noticed that her intestines had shifted. She was diagnosed with malrotation of the intestines. This was corrected with surgery that tacked her intestines back into place before they had a chance to form a knot that would have led to more complications for her. During the surgery, the surgeons also removed her appendix since the surgery would have moved it from its normal location in the abdomen. She later went under another GI surgery.
By the time she was seven months old, she was going to occupational, physical, and speech therapy once a week. At a year and a half old, she was diagnosed with Cerebral Palsy on the left side of her body. A month later, when we were out of town visiting family, I woke up to what I thought was her moving around because she was awake, but was shocked to realize that it was a seizure. She had a CT scan done in the ER, and were told she had brain abnormalities. Both sides of her brain had not formed fully but the right side was worse. When we returned home, she had an EEG done, and the tech told me that she did not know how Mya was not constantly having seizures from the way her EEG looked. A few days later, she underwent a sedated MRI. We were told there were several parts of her brain that were greatly affected by the abnormalities. Once again, I asked myself, how it could get any worse than her brain not being fully developed. She started on a medication that made her very tired for days whenever we had to up her dose due to breakthrough seizures. When she reached the maximum dosage for a medication, another was added. After she hit the highest dose for both of those, we tried a different medication to which she ended up being allergic. It caused us two trips to Urgent Care. She ended up being allergic to the next one we tried as well. The doctors had kept her on the first two while we were trying the others. She was then referred to The Complex Care Epilepsy Clinic. Before we could make it to the first appointment, her seizures started happening in a frequency that we had never before seen. She ended up in the hospital for several days. We went to her appointment a few days after being released and she started another new medication. It was a miracle drug for Mya she was seizure free for just over two years! We were able to be more like a typical family. She still had appointments and therapies but we were all able to take a breath. We went on our first family vacation to the beach, and decided that Mya needed a baby brother or sister.
Throughout all this, Mya has also suffered from chronic ear infections; she is getting ready to have her fourth set of ear tubes put in, in the first week of May. She has had dental surgery to put in three caps and six fillings because the enamel on her teeth is very weak. During all this time, she is having regular Echocardiograms to make sure that everything is still going well with her heart. During one of her Echo’s, her blood pressure was getting too high going through her left pulmonary artery and she was sent to the cath lab to have a stint placed. While in there they confirmed that there was tissue growing just below her aortic valve. We knew then that it would not be long before she needed another open-heart surgery. Just the idea of her having to go through that again shook me to my core. Her first open-heart surgery was supposed to be a one and done surgery, and now we were being told that it needed to happen again. She went in for her second open-heart surgery just shy of four years old. Once again, I thought it could not get any worse. Handing my baby over to the surgical team again, except this time she knew I was handing her over, and having to watch her crying because she wanted her mom and dad was heart wrenching.
On August 17th, just three days after her baby sister was born, Mya started having seizures again. With each seizure she had, we increased her medication. Soon thereafter, she started having trouble going to sleep. As the sleep issues increased so did her behaviors, she was becoming more and more aggressive to herself and to me. I talked to her neurologist and we started her on melatonin to help calm her so she could go to sleep. It helped her get to sleep easier for a while. Then, when her medication was increased a couple more times, the melatonin was no longer enough. We were at a loss of what to do. She was extremely aggressive, and we would spend an hour or more lying in bed each night while she would hit, kick, smack, and scratch me. The behaviors were happening during the day as well. We were losing sight of Mya. She was not acting like our sweet caring little girl, so yet another medication was added to her bedtime routine. It was to help to calm her nerves so that she could fall asleep. It helped her to get to sleep more calmly. As the behaviors started getting better we started noticing that something else was going on, we could tell it was neurological but not sure what. She started having spells where her head would bob, as someone falling asleep sitting up, then it was her hands moving with her head. Soon after, it included eye, mouth, and tongue twitching. Her neurologist told us she was having drop seizures. She went from having a few a day to hundreds a day. It is beyond heartbreaking to watch your child have seizure after seizure. She has moments where she is not even able to walk through our house because they are so strong and so many. My husband and I both knew that this was no way for her to live. The doctors brought her in for an extended EEG. We were asked to push a button every time that we saw seizure activity. After being there for just three hours we were told they had everything that they needed and we could stop pushing the button. The next morning when the doctor came in for rounds, there was nothing that could have prepared me for what was about to come out of his mouth, “Your daughter needs a hemispherectomy.” Instantly the floor was pulled out from under me. All those times that I thought it couldn't get any worse, I realized that I had no idea. They were telling me they wanted to cut into my six year olds brain! Besides the seizures that are happening all day, she is having “sparks” coming from the right side of her brain going to her left side that could cause seizures. She was diagnosed with Electrical Status Epilepticus in Sleep (ESES). ESES means that her EEG gets worse while she is sleeping. The “sparks” are constant. This is a very dangerous condition. She will be undergoing a Formal Right Hemispherectomy in the very near future. This will mean about a month long stay in the hospital. She is no longer attending school since the medications are not able to control her seizures. The seizures continue to change and become stronger while we wait to finish the final appointments and tests leading to this surgery.
Once the surgery is done, she will have a long, hard recovery. She will need to use a wheelchair while she relearns to walk. Her left arm may become tight again. A lot of the skills that she has worked so hard to gain in the past six years, she will need to learn how to do all over again. She will lose the peripheral vision in her left eye. It breaks our hearts to think of the things that she loves to do that she will have to relearn or possibly never do again. Her Physical Medicine doctor told me that once she is done with rehab that she will probably need a more intensive therapy program than she has been in for a long time.
Mya is an amazing little girl. She has taught all of us so much. She loves to spend time with her family. She misses them from the moment they part ways until she sees them again. When we play outside, she always wants to drive her car around or ride her bike. The bike that Santa brought her for Christmas is the first bike that she has shown any interest in riding. She loves to go swimming whenever she can. When all of the seizure first started happening we kept her out of school for a little while. The teachers had to tell the kids that they were not allowed to all run up to her when she came back. They let the kids one by one go hug her. There are so many wonderful things about Mya, she is a little trickster that loves to tease people. She regularly tells me that I can't have any of her kisses because “they are _____'s kisses!” She is such a special little girl. She has been through so much already. We are heartbroken over the thought of her having to go through anything else.
The video below explains a little more, it will play if you hit the "Watch on Vimeo" button.
Mya has never been one for letting things stay calm for too long. When she was born, she needed open heart surgery to repair her four heart defects. I thought that was the worst it could get, how could it get worse than handing over your 4-day-old child to a surgical team that had to stop her heart in order to fix it? While healing from the surgery she had to learn to eat as she had only received food by tubes up to that point. Thankfully, she learned to nurse after about two weeks of eating therapy. Once she was able to come home, we struggled to manage her acid reflux; it took years to get her at a dosage that would keep it under control. Even once we found the right dosage, she would still have episodes while she was sleeping where she could not get her breath due to the acid going up her throat. One night we almost had to call the emergency squad, as she was turning purple because she was unable to take a breath.
When she started eating solid foods, the constipation started. This also took years to find a good balance. Even now at 6 years old, we still have to adjust her medications at times. During a procedure to investigate the cause of her reflux and constipation, the doctors noticed that her intestines had shifted. She was diagnosed with malrotation of the intestines. This was corrected with surgery that tacked her intestines back into place before they had a chance to form a knot that would have led to more complications for her. During the surgery, the surgeons also removed her appendix since the surgery would have moved it from its normal location in the abdomen. She later went under another GI surgery.
By the time she was seven months old, she was going to occupational, physical, and speech therapy once a week. At a year and a half old, she was diagnosed with Cerebral Palsy on the left side of her body. A month later, when we were out of town visiting family, I woke up to what I thought was her moving around because she was awake, but was shocked to realize that it was a seizure. She had a CT scan done in the ER, and were told she had brain abnormalities. Both sides of her brain had not formed fully but the right side was worse. When we returned home, she had an EEG done, and the tech told me that she did not know how Mya was not constantly having seizures from the way her EEG looked. A few days later, she underwent a sedated MRI. We were told there were several parts of her brain that were greatly affected by the abnormalities. Once again, I asked myself, how it could get any worse than her brain not being fully developed. She started on a medication that made her very tired for days whenever we had to up her dose due to breakthrough seizures. When she reached the maximum dosage for a medication, another was added. After she hit the highest dose for both of those, we tried a different medication to which she ended up being allergic. It caused us two trips to Urgent Care. She ended up being allergic to the next one we tried as well. The doctors had kept her on the first two while we were trying the others. She was then referred to The Complex Care Epilepsy Clinic. Before we could make it to the first appointment, her seizures started happening in a frequency that we had never before seen. She ended up in the hospital for several days. We went to her appointment a few days after being released and she started another new medication. It was a miracle drug for Mya she was seizure free for just over two years! We were able to be more like a typical family. She still had appointments and therapies but we were all able to take a breath. We went on our first family vacation to the beach, and decided that Mya needed a baby brother or sister.
Throughout all this, Mya has also suffered from chronic ear infections; she is getting ready to have her fourth set of ear tubes put in, in the first week of May. She has had dental surgery to put in three caps and six fillings because the enamel on her teeth is very weak. During all this time, she is having regular Echocardiograms to make sure that everything is still going well with her heart. During one of her Echo’s, her blood pressure was getting too high going through her left pulmonary artery and she was sent to the cath lab to have a stint placed. While in there they confirmed that there was tissue growing just below her aortic valve. We knew then that it would not be long before she needed another open-heart surgery. Just the idea of her having to go through that again shook me to my core. Her first open-heart surgery was supposed to be a one and done surgery, and now we were being told that it needed to happen again. She went in for her second open-heart surgery just shy of four years old. Once again, I thought it could not get any worse. Handing my baby over to the surgical team again, except this time she knew I was handing her over, and having to watch her crying because she wanted her mom and dad was heart wrenching.
On August 17th, just three days after her baby sister was born, Mya started having seizures again. With each seizure she had, we increased her medication. Soon thereafter, she started having trouble going to sleep. As the sleep issues increased so did her behaviors, she was becoming more and more aggressive to herself and to me. I talked to her neurologist and we started her on melatonin to help calm her so she could go to sleep. It helped her get to sleep easier for a while. Then, when her medication was increased a couple more times, the melatonin was no longer enough. We were at a loss of what to do. She was extremely aggressive, and we would spend an hour or more lying in bed each night while she would hit, kick, smack, and scratch me. The behaviors were happening during the day as well. We were losing sight of Mya. She was not acting like our sweet caring little girl, so yet another medication was added to her bedtime routine. It was to help to calm her nerves so that she could fall asleep. It helped her to get to sleep more calmly. As the behaviors started getting better we started noticing that something else was going on, we could tell it was neurological but not sure what. She started having spells where her head would bob, as someone falling asleep sitting up, then it was her hands moving with her head. Soon after, it included eye, mouth, and tongue twitching. Her neurologist told us she was having drop seizures. She went from having a few a day to hundreds a day. It is beyond heartbreaking to watch your child have seizure after seizure. She has moments where she is not even able to walk through our house because they are so strong and so many. My husband and I both knew that this was no way for her to live. The doctors brought her in for an extended EEG. We were asked to push a button every time that we saw seizure activity. After being there for just three hours we were told they had everything that they needed and we could stop pushing the button. The next morning when the doctor came in for rounds, there was nothing that could have prepared me for what was about to come out of his mouth, “Your daughter needs a hemispherectomy.” Instantly the floor was pulled out from under me. All those times that I thought it couldn't get any worse, I realized that I had no idea. They were telling me they wanted to cut into my six year olds brain! Besides the seizures that are happening all day, she is having “sparks” coming from the right side of her brain going to her left side that could cause seizures. She was diagnosed with Electrical Status Epilepticus in Sleep (ESES). ESES means that her EEG gets worse while she is sleeping. The “sparks” are constant. This is a very dangerous condition. She will be undergoing a Formal Right Hemispherectomy in the very near future. This will mean about a month long stay in the hospital. She is no longer attending school since the medications are not able to control her seizures. The seizures continue to change and become stronger while we wait to finish the final appointments and tests leading to this surgery.
Once the surgery is done, she will have a long, hard recovery. She will need to use a wheelchair while she relearns to walk. Her left arm may become tight again. A lot of the skills that she has worked so hard to gain in the past six years, she will need to learn how to do all over again. She will lose the peripheral vision in her left eye. It breaks our hearts to think of the things that she loves to do that she will have to relearn or possibly never do again. Her Physical Medicine doctor told me that once she is done with rehab that she will probably need a more intensive therapy program than she has been in for a long time.
Mya is an amazing little girl. She has taught all of us so much. She loves to spend time with her family. She misses them from the moment they part ways until she sees them again. When we play outside, she always wants to drive her car around or ride her bike. The bike that Santa brought her for Christmas is the first bike that she has shown any interest in riding. She loves to go swimming whenever she can. When all of the seizure first started happening we kept her out of school for a little while. The teachers had to tell the kids that they were not allowed to all run up to her when she came back. They let the kids one by one go hug her. There are so many wonderful things about Mya, she is a little trickster that loves to tease people. She regularly tells me that I can't have any of her kisses because “they are _____'s kisses!” She is such a special little girl. She has been through so much already. We are heartbroken over the thought of her having to go through anything else.
The video below explains a little more, it will play if you hit the "Watch on Vimeo" button.
Organizer and beneficiary
Doug Hock
Organizer
Columbus, OH
MOLLY GREEN
Beneficiary