When my first baby, Arielle, was in utero, she decided she liked it so much, she’d stay in the oven two weeks longer than most. It was so agonizing to wait and wait and wait, and so for my second time round, we made sure to get the due date right, by dating the pregnancy with an early ultrasound at 9 weeks. Great, we got our date! At 22 weeks in this second pregnancy, I experienced the dread no woman wants to face, as the lab technician was taking much longer than usual, and then left the room to speak to the doctor. The doctor walked in and started immediately referring to cystic kidneys in my baby, as though I already knew. What? My new, perfect baby could possibly have cysts on his left kidney! I was destroyed. My husband and daughter were waiting in the hall, and I while I did my best to control my emotions, eventually, they got the better of me, and through tears, I reported to my husband this news. My world was shattered, or so I thought. Well, after thinking about it some more, we felt comforted by the idea that many people had in fact, lived full and healthy lives with only one kidney, perhaps never knowing, since the technology had not be around during their lives, or they’d never gotten tested for it.
Suffice it to say, I thought it was one of the worst things that ever happened to me, but in hindsight it was only a small taste. Far more sinister things were in store for us.
My pregnancy continued, without any other unusual things, until the end when, again, the start of labour was delayed and delayed and delayed. At 2 weeks, 2 days past the due date, Adlai was finally born. He was pronounced normal at birth, for all the typical things; his Apgar score was 9, head circumference, and other dimensions perfect. An 8lb 12 ouncer, born in 4 hours!
We headed home the next morning to introduce Adlai to his big sister, and she made sure to sing him lullabies and give lots of kisses and hugs. One of the happiest moments of my life as a mother, seeing them meet and fall in love.
The post pregnancy checkups went well: I was healing and Adlai was growing. Nursing was tough, since Adlai was tongue tied, and we faced another challenge at 3 days old: do we cut his tongue and release it so that nursing could continue? Fortunately, the frenotomywent off without a hitch (though with some fear), and nursing improved. But then, at around 2 weeks, the true torture began. Now we had been warned about something called, “The Period of Purple Crying”. This is when an infant cries inconsolably, to the point where their parents loose it, and want to shake them. The video encourages the parents to step away if this happens. In fact, the hospital had sent us home with a video all about it, to inform parents and reduce the instance of shaken baby syndrome. At the time, I laughed it off, and was even a bit irritated, since I thought it could cause parents to put their crying babies down and leave them alone, perhaps when something could be done. But then, it happened to us. Only, it wasn’t the period of purple crying, it was crying-no, screaming, on a scale I had never seen.
Adlai would fall asleep around 11pm, then wake 2 hours later in a full scream, which would last until 3:30 or 4am, every night. I would try everything; bouncing with him on an exercise ball, rocking, swinging, holding and dropping into squats. All this while exhausted. It was ridiculous! I began to unravel. I felt helpless, and of course, very sleep deprived. My toddler daughter required care during the day, and my husband was completing his Ph.D, and he was so stressed and busy, it was hard for him to help me. After a month of this, my friend and mentor, Hetty, saw a big need. She drove the 16 hours or so to come and help us. After a couple days, she had to return to Canada, and she invited the kids and I to come stay with her until things got better. We stayed an entire month. Often, I would nap from 7-9pm to get the energy to deal with his night screaming. It was one of the hardest times of my life.
Finally, we could not stay any longer, so we went back to North Carolina. We’d missed a couple routine checkups, so that was priority upon our return. The doctor checked Adlai’s head circumference a couple times before reporting there was a problem. Adlai’s head was not growing. In fact, the measurement was not even on the normal growth curve. She sent us to the hospital for more tests. We had passed out of the umbrella of ‘routine’ and were entering the world of medicine (a world I know so well now). We met with neurosurgeryto explore craniosynostosis, (premature closing of the fontanelle when the brain cannot grow properly), but and MRI revealed microcephaly- Adlai had a small brain. The only thing was, we didn’t know why.
Coming into this knowledge was shocking and demoralizing, but somehow, it didn’t affect me as much as the trauma of the day-to-dayinconsolable crying. As Adlai’s mother and comforter, I was unable to make it stop. Continuous sleep deprivation led to more terrible feelings of depression, anxiety, and despair.
Typically, I was a mother who trusted in the wisdom of nature, and would avoid medicines like pain killers and always met vaccinations and antibiotics with suspicion. Of course, I did vaccinate and did give antibiotics as needed, but never without the questions… So when my pediatrician wanted to put Adlai on zantac, for stomach reflux, I wasn’t sure. We tried it, for about 2 months, and administering it wasn’t easy, since Adlai had trouble swallowing it and would gag and cough. Unfortunately, things got only slightly better. Then, we started him on Prevacid. I will never forget that day. We were going to the zoo with our daughter. Adlai slept all day, without the typical sleeping/waking up screaming pattern. I was elated to find that this medicine actually worked to give him some comfort. He had such severe reflux (GERD) that was likely one of the major problems with the night screaming.
When Adlai was about 9 months old, my husband finished his Ph.D, and we decided to move back to Canada, since we had family there, and we hoped the medical system could help us find a diagnosis.
The first couple months were very difficult, since we decided to live with a family member, and the house was small and my screaming child disturbed everyone. After 5 weeks there, we decided it wasn’t working and moved into our own little apartment in an area known for a rehabilitation and therapy center for handicapped children.
We still didn’t have a pediatrician and didn’t have an easy time finding one. There were so many times I would call an office and be told there weren’t taking new patients. I called information lines to find out where they were taking patients and was referred to walk in clinics. I even showed up at the emergency room because Adlai was now 10 months old, and refused to do anything but nurse. We needed to see a feeding specialist, and it didn’t look hopeful.
Fortunately, one of my husband’s family members is a doctor, and he connected us to our current neurologist. We saw her before any one else, and she found us a pediatrician. We were so lucky. Our pediatrician had a lot of experience with handicapped children and was part of a clinic within the hospital that serves fragile children. What a Godsend! We set up a meeting for the end of November, when Adlai would be 1 year old, which was about 1 month away.
Then Adlai got sick for the first time. Congestion and cough that sent him into horrible gagging. It was so scary to watch him fighting for his breath. I decided to go to the pediatrician’s walk in clinic hours, and when she saw him gagging, she was very concerned. She knew we didn’t yet have a diagnosis, and said she’d set us up for inpatient testing at the hospital. We were shocked to get a call a couple hours later telling us to come in right away. I remember how nonchalant we were, thinking the purpose of the hospital stay would be finding a diagnosis. In the end, it was, but not before saving his life.
That afternoon, her husband had a deadline for work. The plan was that her mother-in-law would come over to watch my daughter while we took Adlai in. It was raining that day. Riding in the car, we listened as Adlai had a couple more gagging spells, anxious to hear him clear it. Then there was a noise. A sound like a voice, like a word. He’d never made that noise before. I quickly climbed into the back seat beside him. Adlai was gagging silently. I tilted the car seat up as far as I could. He just couldn’t clear it and the area around his mouth began to turn blue. I undid his straps as fast as I could and picked him up to tilt him forward. My husband, very alarmed, drove faster. They were only four blocks away from the hospital. Red light. I yelled, “Drive! Drive!” So he put the 4 ways on and honked as he blew through the intersection. Adlai was limp in my hands, unmoving, and I hit his back hard. Finally, he vomited a huge sludge of mucous and saliva, but no big breathe in, hardly a sound. We got the car right up to the ER door. And I handed Adlai to my husband and he ran in. They broughthim and immediately went to work trying to resuscitate him. They drugged him for seizures, and suctioned his nose and throat with a long tube. Eventually, they intubated him. My husband, who’d volunteered in emergency rooms before, said that intubation was a very bad sign. It was life support. I just wanted to believe that it would all be ok. He’d get through this. He would survive.
After 10 days in the PICU, tests had been done by virtually every department there- neurology, genetics, radiology, ears nose and throat, feeding and nutrition, physiotherapy, you name it.
I will never forget the day the medical resident mentioned their suspicion that it was Fox G1. I asked if there was any information and he handed me an article. After reading it, and taking time to understand all the medical terms, I felt sure this was it. It was as if the article had been written about Adlai specifically. They took a biopsy of tissue for the test and a month later, I got the call that it was confirmed. What a gift that Christmas; a diagnosis! While Fox G1 is nothing to be taken lightly, the relief that came with knowing was enough. Now I had a name, and could learn more and connect with others in the same boat.
Simultaneous to all these events in my family, the International Fox G1 Foundation was being formed by a brave group of fellow mothers. I am eternally grateful for them and the foundation. Knowing you are not alone and that there are resources to help brings hope and comfort.
Two years have passed since then. We’ve had our share of emergency rides in the ambulance (4), which happened in similar circumstances; Adlai gets sick, would have seizures and stop breathing. But now with a suction machine at home, we can help him clear his airway, and medication is controlling seizures. Adlai is sleeping much better, as the GERD is under control (medicine and age). Adlai is able to eat purees now, and eats like a champion most days. He now attends daycare 3 days a week, and loves it, and is loved by the other kids.
After all we’ve been through, after all he’s been through, I can say with absolute sincerity, I am so grateful for him, and for this journey. I have learned so much and I have been given a gift in him.
When my first baby, Arielle, was in utero, she decided she liked it so much, she’d stay in the oven two weeks longer than most. It was so agonizing to wait and wait and wait, and so for my second time round, we made sure to get the due date right, by dating the pregnancy with an early ultrasound at 9 weeks. Great, we got our date! At 22 weeks in this second pregnancy, I experienced the dread no woman wants to face, as the lab technician was taking much longer than usual, and then left the room to speak to the doctor. The doctor walked in and started immediately referring to cystic kidneys in my baby, as though I already knew. What? My new, perfect baby could possibly have cysts on his left kidney! I was destroyed. My husband and daughter were waiting in the hall, and I while I did my best to control my emotions, eventually, they got the better of me, and through tears, I reported to my husband this news. My world was shattered, or so I thought. Well, after thinking about it some more, we felt comforted by the idea that many people had in fact, lived full and healthy lives with only one kidney, perhaps never knowing, since the technology had not be around during their lives, or they’d never gotten tested for it.
Suffice it to say, I thought it was one of the worst things that ever happened to me, but in hindsight it was only a small taste. Far more sinister things were in store for us.
My pregnancy continued, without any other unusual things, until the end when, again, the start of labour was delayed and delayed and delayed. At 2 weeks, 2 days past the due date, Adlai was finally born. He was pronounced normal at birth, for all the typical things; his Apgar score was 9, head circumference, and other dimensions perfect. An 8lb 12 ouncer, born in 4 hours!
We headed home the next morning to introduce Adlai to his big sister, and she made sure to sing him lullabies and give lots of kisses and hugs. One of the happiest moments of my life as a mother, seeing them meet and fall in love.
The post pregnancy checkups went well: I was healing and Adlai was growing. Nursing was tough, since Adlai was tongue tied, and we faced another challenge at 3 days old: do we cut his tongue and release it so that nursing could continue? Fortunately, the frenotomywent off without a hitch (though with some fear), and nursing improved. But then, at around 2 weeks, the true torture began. Now we had been warned about something called, “The Period of Purple Crying”. This is when an infant cries inconsolably, to the point where their parents loose it, and want to shake them. The video encourages the parents to step away if this happens. In fact, the hospital had sent us home with a video all about it, to inform parents and reduce the instance of shaken baby syndrome. At the time, I laughed it off, and was even a bit irritated, since I thought it could cause parents to put their crying babies down and leave them alone, perhaps when something could be done. But then, it happened to us. Only, it wasn’t the period of purple crying, it was crying-no, screaming, on a scale I had never seen.
Adlai would fall asleep around 11pm, then wake 2 hours later in a full scream, which would last until 3:30 or 4am, every night. I would try everything; bouncing with him on an exercise ball, rocking, swinging, holding and dropping into squats. All this while exhausted. It was ridiculous! I began to unravel. I felt helpless, and of course, very sleep deprived. My toddler daughter required care during the day, and my husband was completing his Ph.D, and he was so stressed and busy, it was hard for him to help me. After a month of this, my friend and mentor, Hetty, saw a big need. She drove the 16 hours or so to come and help us. After a couple days, she had to return to Canada, and she invited the kids and I to come stay with her until things got better. We stayed an entire month. Often, I would nap from 7-9pm to get the energy to deal with his night screaming. It was one of the hardest times of my life.
Finally, we could not stay any longer, so we went back to North Carolina. We’d missed a couple routine checkups, so that was priority upon our return. The doctor checked Adlai’s head circumference a couple times before reporting there was a problem. Adlai’s head was not growing. In fact, the measurement was not even on the normal growth curve. She sent us to the hospital for more tests. We had passed out of the umbrella of ‘routine’ and were entering the world of medicine (a world I know so well now). We met with neurosurgeryto explore craniosynostosis, (premature closing of the fontanelle when the brain cannot grow properly), but and MRI revealed microcephaly- Adlai had a small brain. The only thing was, we didn’t know why.
Coming into this knowledge was shocking and demoralizing, but somehow, it didn’t affect me as much as the trauma of the day-to-dayinconsolable crying. As Adlai’s mother and comforter, I was unable to make it stop. Continuous sleep deprivation led to more terrible feelings of depression, anxiety, and despair.
Typically, I was a mother who trusted in the wisdom of nature, and would avoid medicines like pain killers and always met vaccinations and antibiotics with suspicion. Of course, I did vaccinate and did give antibiotics as needed, but never without the questions… So when my pediatrician wanted to put Adlai on zantac, for stomach reflux, I wasn’t sure. We tried it, for about 2 months, and administering it wasn’t easy, since Adlai had trouble swallowing it and would gag and cough. Unfortunately, things got only slightly better. Then, we started him on Prevacid. I will never forget that day. We were going to the zoo with our daughter. Adlai slept all day, without the typical sleeping/waking up screaming pattern. I was elated to find that this medicine actually worked to give him some comfort. He had such severe reflux (GERD) that was likely one of the major problems with the night screaming.
When Adlai was about 9 months old, my husband finished his Ph.D, and we decided to move back to Canada, since we had family there, and we hoped the medical system could help us find a diagnosis.
The first couple months were very difficult, since we decided to live with a family member, and the house was small and my screaming child disturbed everyone. After 5 weeks there, we decided it wasn’t working and moved into our own little apartment in an area known for a rehabilitation and therapy center for handicapped children.
We still didn’t have a pediatrician and didn’t have an easy time finding one. There were so many times I would call an office and be told there weren’t taking new patients. I called information lines to find out where they were taking patients and was referred to walk in clinics. I even showed up at the emergency room because Adlai was now 10 months old, and refused to do anything but nurse. We needed to see a feeding specialist, and it didn’t look hopeful.
Fortunately, one of my husband’s family members is a doctor, and he connected us to our current neurologist. We saw her before any one else, and she found us a pediatrician. We were so lucky. Our pediatrician had a lot of experience with handicapped children and was part of a clinic within the hospital that serves fragile children. What a Godsend! We set up a meeting for the end of November, when Adlai would be 1 year old, which was about 1 month away.
Then Adlai got sick for the first time. Congestion and cough that sent him into horrible gagging. It was so scary to watch him fighting for his breath. I decided to go to the pediatrician’s walk in clinic hours, and when she saw him gagging, she was very concerned. She knew we didn’t yet have a diagnosis, and said she’d set us up for inpatient testing at the hospital. We were shocked to get a call a couple hours later telling us to come in right away. I remember how nonchalant we were, thinking the purpose of the hospital stay would be finding a diagnosis. In the end, it was, but not before saving his life.
That afternoon, her husband had a deadline for work. The plan was that her mother-in-law would come over to watch my daughter while we took Adlai in. It was raining that day. Riding in the car, we listened as Adlai had a couple more gagging spells, anxious to hear him clear it. Then there was a noise. A sound like a voice, like a word. He’d never made that noise before. I quickly climbed into the back seat beside him. Adlai was gagging silently. I tilted the car seat up as far as I could. He just couldn’t clear it and the area around his mouth began to turn blue. I undid his straps as fast as I could and picked him up to tilt him forward. My husband, very alarmed, drove faster. They were only four blocks away from the hospital. Red light. I yelled, “Drive! Drive!” So he put the 4 ways on and honked as he blew through the intersection. Adlai was limp in my hands, unmoving, and I hit his back hard. Finally, he vomited a huge sludge of mucous and saliva, but no big breathe in, hardly a sound. We got the car right up to the ER door. And I handed Adlai to my husband and he ran in. They broughthim and immediately went to work trying to resuscitate him. They drugged him for seizures, and suctioned his nose and throat with a long tube. Eventually, they intubated him. My husband, who’d volunteered in emergency rooms before, said that intubation was a very bad sign. It was life support. I just wanted to believe that it would all be ok. He’d get through this. He would survive.
After 10 days in the PICU, tests had been done by virtually every department there- neurology, genetics, radiology, ears nose and throat, feeding and nutrition, physiotherapy, you name it.
I will never forget the day the medical resident mentioned their suspicion that it was Fox G1. I asked if there was any information and he handed me an article. After reading it, and taking time to understand all the medical terms, I felt sure this was it. It was as if the article had been written about Adlai specifically. They took a biopsy of tissue for the test and a month later, I got the call that it was confirmed. What a gift that Christmas; a diagnosis! While Fox G1 is nothing to be taken lightly, the relief that came with knowing was enough. Now I had a name, and could learn more and connect with others in the same boat.
Simultaneous to all these events in my family, the International Fox G1 Foundation was being formed by a brave group of fellow mothers. I am eternally grateful for them and the foundation. Knowing you are not alone and that there are resources to help brings hope and comfort.
Two years have passed since then. We’ve had our share of emergency rides in the ambulance (4), which happened in similar circumstances; Adlai gets sick, would have seizures and stop breathing. But now with a suction machine at home, we can help him clear his airway, and medication is controlling seizures. Adlai is sleeping much better, as the GERD is under control (medicine and age). Adlai is able to eat purees now, and eats like a champion most days. He now attends daycare 3 days a week, and loves it, and is loved by the other kids.
After all we’ve been through, after all he’s been through, I can say with absolute sincerity, I am so grateful for him, and for this journey. I have learned so much and I have been given a gift in him.