Many of you know that William was born with hand and feet differences. We have learned over the past year that the correct terms for these differences are called, Syndactyly (fusing/webbing of fingers) and Ectrodactyly (missing and additional digits). We had no known indication that he would be born with these differences. I had a very normal, healthy pregnancy. Nothing was detected on ultrasound because I only had one done at 20 weeks and we didn't notice anything different there. We declined all special tests because it simply wouldn't matter to us.
I first noticed his missing finger after he was born and placed on my stomach for Ben to cut his cord. I remember being in awe of him and running my finger up his sweet little palm, trying to calm him. As I ran my finger up his tiny palm it seemed as though he didn't have a middle finger. I thought maybe it just didn't come up with the rest of the fingers so I ran my finger up his palm again and sure enough, he really didn't have a middle finger. I remember expressing that right away... out of shock and concern only hoping the rest of him was okay and healthy. They cleaned him up, gave him a CPAP for 5 minutes, let me hold him for a few seconds and then wheeled him off to the NICU with daddy to make sure everything was okay. I remember when Ben came back to check on me, he told me that William was doing great and told me about the rest of his hands and feet. I don't ever remember asking "Why me or Why us?"... I just remember taking it for what it was and just being so in love with him. Every last bit of him was ours and it made me happy to see him doing well despite being born early and having a low birth weight. He didn't need an IV, he didn't need any extra help breathing, he was doing great. He did have to stay in the hospital for the gavage tube for food (since he was low birth weight - 4lbs. 12oz) and typical monitoring to see that his weight increased. I remember that being a pretty long and exhausting week. We were literally living at the hospital so we could be close to him and so I could breast feed him around the clock.
The Neonatologist told us a little more about William's hands and feet and gave us the correct terms. He told us it could have been passed down from family or an isolated occurrence... and may or may not have a syndrome or syndromes involved. We were referred to Scottish Rite and told we would need to visit them within the first month of William being born. Scottish Rite is amazing... they are extremely knowledgeable and the Orthopedics doctors are absolutely top notch. We are so blessed to live so close to them. They explained to us a little more about William's differences and told us that as far as they are concerned, his condition is pretty mild and he should have normal function of his hands and feet despite the differences. As he has grown and as we have gone back to visit Scottish Rite for check-ups... his hands and feet continue to grow normally for the condition they are in and he has proven to function great. He is walking and picking up things and everything an 18 month old should be doing. Both the Neonatologist and Dr.s at Scottish Rite recommended we see a Geneticist at some point for evaluation and also to see if William has any detectable syndromes.
We went to the Geneticist this past Friday. Dr. Golder Wilson is fabulous. He is so nice, thorough and knows his stuff. We were very pleased with our visit with him. During the visit, he watched as William played with the toys in the room. He talked to us about William's milestones, our family history, William's medical history etc. Towards the end of the 45 minutes he told us that William is very advanced cognitively and that he looks great! He then told us that he sees that William favors what is called "Ectrodactyly Ectodermal-Dysplasia Cleft-Lip/Palate Syndrome or EEC with the exception of no cleft lip/palate. He told us that Ectodermal-Dysplasia is a very rare genetic condition that is used to describe hundreds of different conditions and syndromes all varying in differences. The "ectoderm" is the outter most layer of cells affecting the hair, skin, nails, teeth, mouth, eyes and sweat glands. They can all be affected at the same time or it can be a combination of 2 or more of these. This explains William's light, sparse hair, his wide-set eyes (although the Dr. stated he also gets that from me)... it also explains his Ectrodactyly that he was born with as well as the Hypospadias (already corrected) that he was born with and the Dacryocystitis that he developed in his eye when he was a month old.
We are trying to soak up all this information.. there is a lot more to learn about this syndrome but we have been told that the outlook is great and that William will be able to live a normal, full life. He may develop issues with little to no sweating later in life so we will have to be extra diligent that he doesn't overheat, there is a possibility of stunted growth and we already know he will have surgeries on his hands (at least) in the years to come but we are grateful that his future looks bright. He has amazed us from day one. His strength and happiness is contagious. He truly is so special to our whole family. We love him so so much.
As a mother, I think we all want the very best for our children. For the most part, I have been so positive and I have been able to just admire William for all he has overcome in the past year and a half. He has been through more than most kids his age and he is hardly 18months! Yesterday was an emotional day for me. I don't know why...but I think things just hit a little hard. Until Friday, we didn't have a syndrome to attach to William's differences and I was fine with that. I guess now that there is an actual syndrome attached (even though William appears to have very mild symptoms), I've now become such a worry wart. I cried a lot yesterday and I can't say the thoughts of "why me?" came into my head... but I did think, "Why him?". I don't want him to struggle... I don't want him to be bullied... I don't want him to lose confidence in his unlimited potential. I don't want him to ever overheat and I especially don't want to be the cause of that! I don't want him to ever think less of himself because he was born with a rare condition. I don't want to see my sweet boy go through these things. But really, who does? What I do want is to be the kind of mother who can instill confidence in my son. I want him to know how much his mommy and daddy and family love him... How much Heavenly Father loves him! I want him to know that he is fearfully and wonderfully made! I want him to find successes in his life and to overcome all these obstacles that he may face. I want him to know how much he inspires us. I want him to know that he can do ANYTHING he puts his mind to. I want him to continue to be so care free and love everyone as he does now and not let the nasty comments of the world get to him. I want him to see how truly special he is and let that be the power behind the difference he can make in this world.
I know that every one of us is different in some way and I know that every one of us has different trials and obstacles to overcome. I know that we were meant to come to this earth to live our specific lives and to learn and grow through our trials. I know that we will all be perfected in the last days and that our bodies will be made perfect all because of the love and grace of our Savior Jesus Christ who suffered and died for all of us. We won't have the struggles that we face now. I know that Heavenly Father has a purpose for our William and I know that he will use William to teach and inspire others as he already has so far. I have Faith that whatever is meant to be will be and I know that Heavenly Father is aware of William and He is also aware of me. He knows the desires of my heart as a mother and I know that he will provide peace and strength as I seek it from Him. My Aunt Kim always says, knowledge is power and I know how true that is. I know that as I learn more about the details of this syndrome that may or may not manifest themselves in William, that I will be prepared to deal with them appropriately. I am SO grateful to have been chosen to be his momma. I am so grateful that Heavenly Father has trusted me to nurture and love him. I feel so blessed to have him in my life and I wouldn't trade him for anything. I love him for who he is and all that he is. He is mine and he is amazing and I couldn't ask for a better gift. I've said it many times before but being a mother is truly the hardest but most rewarding things I will ever do.
To anyone who may be reading this and might have questions... ASK us. When done in a respect manner the best thing a curious mind can do is ASK. Don't wonder or assume. We are so open to curiosity and questions when they are asked with good intention. If your children have questions about someone with physical differences, I think I speak for a lot of families when I say, just ask! There is nothing wrong with curiosity and certainly nothing wrong with recognizing that someone or something is a little different. Create learning moments for those around you and help them recognize how each and everyone of us has something that makes us unique and special, whether it's on the inside or outside.
I first noticed his missing finger after he was born and placed on my stomach for Ben to cut his cord. I remember being in awe of him and running my finger up his sweet little palm, trying to calm him. As I ran my finger up his tiny palm it seemed as though he didn't have a middle finger. I thought maybe it just didn't come up with the rest of the fingers so I ran my finger up his palm again and sure enough, he really didn't have a middle finger. I remember expressing that right away... out of shock and concern only hoping the rest of him was okay and healthy. They cleaned him up, gave him a CPAP for 5 minutes, let me hold him for a few seconds and then wheeled him off to the NICU with daddy to make sure everything was okay. I remember when Ben came back to check on me, he told me that William was doing great and told me about the rest of his hands and feet. I don't ever remember asking "Why me or Why us?"... I just remember taking it for what it was and just being so in love with him. Every last bit of him was ours and it made me happy to see him doing well despite being born early and having a low birth weight. He didn't need an IV, he didn't need any extra help breathing, he was doing great. He did have to stay in the hospital for the gavage tube for food (since he was low birth weight - 4lbs. 12oz) and typical monitoring to see that his weight increased. I remember that being a pretty long and exhausting week. We were literally living at the hospital so we could be close to him and so I could breast feed him around the clock.
The Neonatologist told us a little more about William's hands and feet and gave us the correct terms. He told us it could have been passed down from family or an isolated occurrence... and may or may not have a syndrome or syndromes involved. We were referred to Scottish Rite and told we would need to visit them within the first month of William being born. Scottish Rite is amazing... they are extremely knowledgeable and the Orthopedics doctors are absolutely top notch. We are so blessed to live so close to them. They explained to us a little more about William's differences and told us that as far as they are concerned, his condition is pretty mild and he should have normal function of his hands and feet despite the differences. As he has grown and as we have gone back to visit Scottish Rite for check-ups... his hands and feet continue to grow normally for the condition they are in and he has proven to function great. He is walking and picking up things and everything an 18 month old should be doing. Both the Neonatologist and Dr.s at Scottish Rite recommended we see a Geneticist at some point for evaluation and also to see if William has any detectable syndromes.
We went to the Geneticist this past Friday. Dr. Golder Wilson is fabulous. He is so nice, thorough and knows his stuff. We were very pleased with our visit with him. During the visit, he watched as William played with the toys in the room. He talked to us about William's milestones, our family history, William's medical history etc. Towards the end of the 45 minutes he told us that William is very advanced cognitively and that he looks great! He then told us that he sees that William favors what is called "Ectrodactyly Ectodermal-Dysplasia Cleft-Lip/Palate Syndrome or EEC with the exception of no cleft lip/palate. He told us that Ectodermal-Dysplasia is a very rare genetic condition that is used to describe hundreds of different conditions and syndromes all varying in differences. The "ectoderm" is the outter most layer of cells affecting the hair, skin, nails, teeth, mouth, eyes and sweat glands. They can all be affected at the same time or it can be a combination of 2 or more of these. This explains William's light, sparse hair, his wide-set eyes (although the Dr. stated he also gets that from me)... it also explains his Ectrodactyly that he was born with as well as the Hypospadias (already corrected) that he was born with and the Dacryocystitis that he developed in his eye when he was a month old.
We are trying to soak up all this information.. there is a lot more to learn about this syndrome but we have been told that the outlook is great and that William will be able to live a normal, full life. He may develop issues with little to no sweating later in life so we will have to be extra diligent that he doesn't overheat, there is a possibility of stunted growth and we already know he will have surgeries on his hands (at least) in the years to come but we are grateful that his future looks bright. He has amazed us from day one. His strength and happiness is contagious. He truly is so special to our whole family. We love him so so much.
As a mother, I think we all want the very best for our children. For the most part, I have been so positive and I have been able to just admire William for all he has overcome in the past year and a half. He has been through more than most kids his age and he is hardly 18months! Yesterday was an emotional day for me. I don't know why...but I think things just hit a little hard. Until Friday, we didn't have a syndrome to attach to William's differences and I was fine with that. I guess now that there is an actual syndrome attached (even though William appears to have very mild symptoms), I've now become such a worry wart. I cried a lot yesterday and I can't say the thoughts of "why me?" came into my head... but I did think, "Why him?". I don't want him to struggle... I don't want him to be bullied... I don't want him to lose confidence in his unlimited potential. I don't want him to ever overheat and I especially don't want to be the cause of that! I don't want him to ever think less of himself because he was born with a rare condition. I don't want to see my sweet boy go through these things. But really, who does? What I do want is to be the kind of mother who can instill confidence in my son. I want him to know how much his mommy and daddy and family love him... How much Heavenly Father loves him! I want him to know that he is fearfully and wonderfully made! I want him to find successes in his life and to overcome all these obstacles that he may face. I want him to know how much he inspires us. I want him to know that he can do ANYTHING he puts his mind to. I want him to continue to be so care free and love everyone as he does now and not let the nasty comments of the world get to him. I want him to see how truly special he is and let that be the power behind the difference he can make in this world.
I know that every one of us is different in some way and I know that every one of us has different trials and obstacles to overcome. I know that we were meant to come to this earth to live our specific lives and to learn and grow through our trials. I know that we will all be perfected in the last days and that our bodies will be made perfect all because of the love and grace of our Savior Jesus Christ who suffered and died for all of us. We won't have the struggles that we face now. I know that Heavenly Father has a purpose for our William and I know that he will use William to teach and inspire others as he already has so far. I have Faith that whatever is meant to be will be and I know that Heavenly Father is aware of William and He is also aware of me. He knows the desires of my heart as a mother and I know that he will provide peace and strength as I seek it from Him. My Aunt Kim always says, knowledge is power and I know how true that is. I know that as I learn more about the details of this syndrome that may or may not manifest themselves in William, that I will be prepared to deal with them appropriately. I am SO grateful to have been chosen to be his momma. I am so grateful that Heavenly Father has trusted me to nurture and love him. I feel so blessed to have him in my life and I wouldn't trade him for anything. I love him for who he is and all that he is. He is mine and he is amazing and I couldn't ask for a better gift. I've said it many times before but being a mother is truly the hardest but most rewarding things I will ever do.
To anyone who may be reading this and might have questions... ASK us. When done in a respect manner the best thing a curious mind can do is ASK. Don't wonder or assume. We are so open to curiosity and questions when they are asked with good intention. If your children have questions about someone with physical differences, I think I speak for a lot of families when I say, just ask! There is nothing wrong with curiosity and certainly nothing wrong with recognizing that someone or something is a little different. Create learning moments for those around you and help them recognize how each and everyone of us has something that makes us unique and special, whether it's on the inside or outside.
We love you bubba!
This is beautiful and inspiring he is perfect and is so lucky to have you as his mother.
ReplyDeleteLoved reading your blog. We have 2 boys (ages 12 and 5) that have EEC Syndrome. They are a true blessing in our lives as well as our other children (we have 2 other boys, ages 14 and 6 that are not affected). Learning about EEC and talking with others experiencing similar things is huge with this syndrome, as most doctors will not be familiar with it. We live in central Kansas and educate most of the doctors we see, although they've been very willing to read up on EEC. The NFED (National Foundation for Ectodermal Dysplasias) has been the best resource we've found. They are based out of Fairview Heights, IL (about 30 minutes east of St. Louis). We started going to their national family conferences when our oldest affected son was 4 and met so many other families that we now consider our best friends from around the world. We have a bond with these families that not everyone can understand - the NFED has basically become our family! This summer we attended our 9th family conference and base our vacation each year around it. I do not write on my blog anymore, but for a number of years I blogged about things with my boys also ---- you can find it at http://www.huxmanfamily.blogspot.com/ if you'd like to read about some of our experiences. I would love to talk with you more. It sounds crazy, but I love to meet others that have children with EEC and be resources for each other. Sounds like you are doing AWESOME as a mother and YES, your child will have a normal life, just possibly more doctors visits and surgeries than others. They love life and enjoy it! Enjoy it with him!
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