I am back from my 5 month hiatus. We have been very busy but have been doing our best to keep everyone updated about Aiden through his Facebook page.
The past few weeks we have begun to feel that we want to share more specifics about Aiden's needs to help educate others, as well as give everyone a more specific way to pray. Up to this point, we have kept Aiden's needs private as we learned more about them. We also have gone back and forth about letting others knowing because we want him to have the privacy he needs as he grows. However, we think now is the time to share, so much so, that the Lord (and not my boys) woke me (Shana) up this morning at 4:00 pushing me to go ahead and write this. So here it goes...
One year ago, Alana (my daughter) and I saw this beautiful Asian face pop up on our adoption portal. Alana said she wanted to get more information about him. A few days later we received Aiden's file. As we read the file, it said he was born with Anal Atresia (also known as Imperforate Anus). The proper term for this defect in Anorectal Malformation (ARM's). He was found abandoned at a hospital at five days old, having no anal opening and needing emergency life-saving surgery. After that surgery, he was given a colostomy and several months later a reversal, so he was no longer in need of a colostomy.
I had never heard of IA before, so I began rigorous research as we needed to let the adoption agency know if we were interested. I found out that 1 in 5,000 babies are born with IA and that most children that received the corrective surgery in China will need a redo surgery once they are home. I joined an incredible Facebook group for moms that have adopted children with IA and read every file they had posted. This group has become my lifeline. The moms in this group connected me with the very few specialists we have in the States for children with ARM's. We had two specialists review Aiden's file and give us feedback. We sent a list of questions to his orphanage, as well. With my initial research, we thought this was a need we could handle. Aiden would probably need a surgery or two, a daily laxative or enema, and lots of love. I am confident now that God did not reveal how severe Aiden's needs were because we would have said, "No", and the thought of not having him is devastating.
As we waited for the orphanage to answer our medical questions about him, basically letting us know if he was a minor case or a major case, we just couldn't stop staring at his picture. This child's face had captivated us, and we knew regardless of the answers we received that he was our son. We were scared, but knew we needed to take that huge leap of faith and bring him home. We ended up emailing our agency and telling them we wanted him before we received any feedback from the orphanage.
Now to educate you on ARM's. An ARM is a spectrum of abnormalities of the rectum and anus. There are many possible abnormalities such as:
• The absence of an anal opening.
• The anal opening in the wrong place.
• A connection, or fistula, joining the intestine and urinary system.
• A connection joining the intestine and vagina.
• In females, the intestine can join with the urinary system and vagina in a single opening, known as cloaca.
The name of the surgery to repair this defect is called the PSARP (posterior sagittal anorectoplasty or pull-through procedure) which was introduced by Dr. Alberto Pena at Cincinnati Children's Hospital in 1980. This surgical procedure revolutionized the treatment and outcome for these children. Often, children adopted from China do not receive this surgical procedure and an older technique may be used.
There are other birth defects associated with ARM's. Children with ARMs can fall on the VACTERL association spectrum. If a child is diagnosed with VACTERL, they typically have 3 or more of the anomalies listed below. Often parents are “surprised” to learn about these anomalies once home.
V – vertebral anomalies – the most common thing we see in our children is a tethered cord
A – anorectal malformation
C – Cardiac or heart defects
TE – tracheoesophageal atresia/fistula
R – renal or kidney
L – limb abnormalities
In addition to the above anomalies, girls born with an ARM often have gynecological concerns/anomalies (including cloaca) and hypospadias is often found in boys.
Aiden has the "V", fatty filium (tethered cord); "A"; "C" but very minor; and "R", kidney reflux and neurogenic bladder.
Children with IA can either have chronic constipation or cannot hold stool. Most of these children can become continent with a bowel management program which includes either a daily laxative or daily enema.
On Aiden's Gotcha Day, he was sitting on a potty when we first saw him. We later learned that this is where he spent the majority of his time. When his nannies took him to the bathroom to show me his bottom I almost became physically ill. My baby was in pain and I couldn't believe what I was seeing. It was heartbreaking. When we returned to the hotel and changed his diaper, we were in shock. Aiden had a raw bottom from the continual stooling. China was a traumatic experience for us all. Although we had taken a pharmacy with us to treat all the possibilities of the level of IA he had, we did not have what we needed for this rash. We weren't prepared for this type of rash.
We thought for sure when we got home our doctors and other IA moms would know exactly what to do to make this rash go away. For seven months, we have tried everything imaginable to make this rash disappear and bring relief to Aiden. It has gotten 80% better since that first day we saw Aiden. However, it still lingers.
We have found out that the China doctors removed more of Aiden's colon than they needed to during that first surgery. He is hypermotile so he cannot hold stool, yet. His surgery in October removed a lot of scarring in his rectum and the surgeon lined up his rectum correctly and reconstructed his anal opening. We have since had to do anal dilations daily so that the opening does not close. This will continue for another year although it will taper off. This is a traumatic experience for Aiden every day. Aiden also receives high volume enemas daily and then sits on his potty for an hour after that. The goal has been to clean him out for 24 hours so that there is no stool on his bottom, therefore healing his rash. The enamas do help him go longer without stool which has helped tremendously, but we still can't go 24 hours.
Aiden has been through more in his three years of life, than I feel I could ever endure. He truly is my little hero! Since we feel we have tried everything to make this rash go away to no avail, our surgeon decided this week that we have to give him some relief and let his bottom heal.
On Monday, January 18, Aiden and I will travel back to Cincinnati. On Tuesday, he will have surgery to have a stoma placed for a colostomy. This will be a temporary colostomy until he can have his next surgery in about a year. I am anxious and hopeful that this is what is going to help him live pain-free finally.
I ran into a friend last night who also has a child with special needs so understands how we are feeling. She encouraged me that even though I feel like I am at the deep end of the pool drowning, that God is holding me and that His feet touch the ground. She reminded me that God has given us a son that is uniquely designed in His image, and He has mighty plans for Aiden! The Lord used her, as He has so many people, at just the right time to encourage me.
The past few weeks we have begun to feel that we want to share more specifics about Aiden's needs to help educate others, as well as give everyone a more specific way to pray. Up to this point, we have kept Aiden's needs private as we learned more about them. We also have gone back and forth about letting others knowing because we want him to have the privacy he needs as he grows. However, we think now is the time to share, so much so, that the Lord (and not my boys) woke me (Shana) up this morning at 4:00 pushing me to go ahead and write this. So here it goes...
One year ago, Alana (my daughter) and I saw this beautiful Asian face pop up on our adoption portal. Alana said she wanted to get more information about him. A few days later we received Aiden's file. As we read the file, it said he was born with Anal Atresia (also known as Imperforate Anus). The proper term for this defect in Anorectal Malformation (ARM's). He was found abandoned at a hospital at five days old, having no anal opening and needing emergency life-saving surgery. After that surgery, he was given a colostomy and several months later a reversal, so he was no longer in need of a colostomy.
I had never heard of IA before, so I began rigorous research as we needed to let the adoption agency know if we were interested. I found out that 1 in 5,000 babies are born with IA and that most children that received the corrective surgery in China will need a redo surgery once they are home. I joined an incredible Facebook group for moms that have adopted children with IA and read every file they had posted. This group has become my lifeline. The moms in this group connected me with the very few specialists we have in the States for children with ARM's. We had two specialists review Aiden's file and give us feedback. We sent a list of questions to his orphanage, as well. With my initial research, we thought this was a need we could handle. Aiden would probably need a surgery or two, a daily laxative or enema, and lots of love. I am confident now that God did not reveal how severe Aiden's needs were because we would have said, "No", and the thought of not having him is devastating.
As we waited for the orphanage to answer our medical questions about him, basically letting us know if he was a minor case or a major case, we just couldn't stop staring at his picture. This child's face had captivated us, and we knew regardless of the answers we received that he was our son. We were scared, but knew we needed to take that huge leap of faith and bring him home. We ended up emailing our agency and telling them we wanted him before we received any feedback from the orphanage.
Now to educate you on ARM's. An ARM is a spectrum of abnormalities of the rectum and anus. There are many possible abnormalities such as:
• The absence of an anal opening.
• The anal opening in the wrong place.
• A connection, or fistula, joining the intestine and urinary system.
• A connection joining the intestine and vagina.
• In females, the intestine can join with the urinary system and vagina in a single opening, known as cloaca.
The name of the surgery to repair this defect is called the PSARP (posterior sagittal anorectoplasty or pull-through procedure) which was introduced by Dr. Alberto Pena at Cincinnati Children's Hospital in 1980. This surgical procedure revolutionized the treatment and outcome for these children. Often, children adopted from China do not receive this surgical procedure and an older technique may be used.
There are other birth defects associated with ARM's. Children with ARMs can fall on the VACTERL association spectrum. If a child is diagnosed with VACTERL, they typically have 3 or more of the anomalies listed below. Often parents are “surprised” to learn about these anomalies once home.
V – vertebral anomalies – the most common thing we see in our children is a tethered cord
A – anorectal malformation
C – Cardiac or heart defects
TE – tracheoesophageal atresia/fistula
R – renal or kidney
L – limb abnormalities
In addition to the above anomalies, girls born with an ARM often have gynecological concerns/anomalies (including cloaca) and hypospadias is often found in boys.
Aiden has the "V", fatty filium (tethered cord); "A"; "C" but very minor; and "R", kidney reflux and neurogenic bladder.
Children with IA can either have chronic constipation or cannot hold stool. Most of these children can become continent with a bowel management program which includes either a daily laxative or daily enema.
On Aiden's Gotcha Day, he was sitting on a potty when we first saw him. We later learned that this is where he spent the majority of his time. When his nannies took him to the bathroom to show me his bottom I almost became physically ill. My baby was in pain and I couldn't believe what I was seeing. It was heartbreaking. When we returned to the hotel and changed his diaper, we were in shock. Aiden had a raw bottom from the continual stooling. China was a traumatic experience for us all. Although we had taken a pharmacy with us to treat all the possibilities of the level of IA he had, we did not have what we needed for this rash. We weren't prepared for this type of rash.
We thought for sure when we got home our doctors and other IA moms would know exactly what to do to make this rash go away. For seven months, we have tried everything imaginable to make this rash disappear and bring relief to Aiden. It has gotten 80% better since that first day we saw Aiden. However, it still lingers.
We have found out that the China doctors removed more of Aiden's colon than they needed to during that first surgery. He is hypermotile so he cannot hold stool, yet. His surgery in October removed a lot of scarring in his rectum and the surgeon lined up his rectum correctly and reconstructed his anal opening. We have since had to do anal dilations daily so that the opening does not close. This will continue for another year although it will taper off. This is a traumatic experience for Aiden every day. Aiden also receives high volume enemas daily and then sits on his potty for an hour after that. The goal has been to clean him out for 24 hours so that there is no stool on his bottom, therefore healing his rash. The enamas do help him go longer without stool which has helped tremendously, but we still can't go 24 hours.
Aiden has been through more in his three years of life, than I feel I could ever endure. He truly is my little hero! Since we feel we have tried everything to make this rash go away to no avail, our surgeon decided this week that we have to give him some relief and let his bottom heal.
On Monday, January 18, Aiden and I will travel back to Cincinnati. On Tuesday, he will have surgery to have a stoma placed for a colostomy. This will be a temporary colostomy until he can have his next surgery in about a year. I am anxious and hopeful that this is what is going to help him live pain-free finally.
I ran into a friend last night who also has a child with special needs so understands how we are feeling. She encouraged me that even though I feel like I am at the deep end of the pool drowning, that God is holding me and that His feet touch the ground. She reminded me that God has given us a son that is uniquely designed in His image, and He has mighty plans for Aiden! The Lord used her, as He has so many people, at just the right time to encourage me.