Rare Birth Defects: Babies Born Without Eyes - What is Anophthalmia And Microphthalmia
98When Birth Defects Hit Home
My son Pat just turned 31 a few weeks ago and although it triggered the usual memories of his birth and what we all lived through at the time, mostly what came to mind was that this happened 31 years ago and there is still no 'cure' or way to prevent this from happening on the horizon. How quickly those 31 years went by! And why is it on the increase?
Patrick was our second child and although I had an extremely long pregnancy (by dates I was 3-1/2 weeks overdue) it was a fairly benign pregnancy. The only thing I could say was that I was sicker with him than I had been with my first or subsequently with my third. I did contract a virus of some kind in my first trimester, had a high fever and was pretty sick but nothing really 'out of the ordinary' stood out or so I thought.
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When I finally did go into labor after thinking I was going to be pregnant for the rest of my life, it was a remarkably short affair. I think I was in the hospital all of 45 minutes and pushing. Something happened to me at the delivery though and there was some concern about me hemorrhaging; in retrospect I think that's why things happened as they did. The doctor delivered Patrick, we all saw him; they even put drops in his eyes. I did not hold him because they were still working on me but no one noticed anything amiss. He was whisked off to the nursery for examination and I remember thinking 'here we go' - off on a new adventure with our second little boy.
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At some point, Bob slipped away to go get a peek at his little guy (he had weighed in at almost 9 pounds and was so cute). What he did not expect was to see the nurse who was examining him in the nursery jump half out of her skin. When she went to look into his eyes, she discovered the tragedy - there was one completely missing. It didn't take my husband long to figure out 'Houston, we have a problem'. He burst in demanding in his own soft spoken way to know what she had found. It really was not her place to tell him but given the unfortunate circumstances, I'm sure being confronted by a father on the verge of hysteria if he did not get an answer, made her decide she had to tell him and summon someone. I always think about that poor woman - I bet that did not make her day! And I think about my poor Bob standing there trying to cope with that on his own.
Meanwhile, back in the recovery room, I'm getting upset because I want my baby - regardless of what is going on with me, I want to see my baby, hold my baby, and start bonding with him. Finally after much debate (all on my part) and me finally threatening to get up off the gurney and go find him if need be, the nurses and staff told me to calm myself down and they would make sure someone brought the baby to me.
As they say, hindsight is always 20/20 and crystal clear. On looking back on the events of that evening, I realized what I was looking at but was not seeing even though it was right in front of me. At the time, I was just trying to convince myself that all was well and that I was being too paranoid. When the nurses came in with Patrick and my husband in tow, I could have sworn that Bob looked like he had seen a ghost. I could have sworn that people were acting 'weird' but I kept asking myself at the time why would they do that?
When I reached for Patrick, the nurse very carefully turned (I remembered later) to the side and kept him swaddled in the blankets turned away from me. I only saw his right side. It was like she was hugging him to herself. He looked perfectly content and sweetly sleeping to me. But why was everyone acting so funny?
When I asked them to give him to me so I could nurse, they all said practically in unison 'NO; we don't know if you are going to have to go to the OR so we don't want you taking the baby right now; we need to keep an eye on YOU'. Then they all started to exit stage left. I sensed something was definitely wrong so I blurted out at the last minute 'stop right there - what is going on?' Looking all very guilty indeed, they turned around and the nurse holding Pat said 'okay - you got us - there's something a bit wrong with the baby's eyes. We need to have a specialist come in and examine him; and you are in no condition right now to be getting upset'.
I remember very vividly specifically asking (I am a medical transcriptionist by trade and all sorts of possibilties were going through my head rapid fire) if it was something along the lines of his eyes being crossed or something. I wasn't overly concerned about that because I knew that that was a condition that could be fixed. When everyone rushed to exclaim 'yes - that's it' I still had the funny feeling that I was missing something. But why would they lie?
As things turned out, I did not have to go to the OR; the bleeding eventually stopped, and I was sent up to the floor where I was in a room by myself for the time being. Bob had come in to say goodbye but he had been really 'stiff' and definitely not himself. I kept trying to reassure him that everything would be okay as I understood crossed eyes was no big deal. The baby would be good as new with a little minor surgery. However, I was still upset that they were not bringing me the baby. He kept reassuring ME that they needed me to rest and were still worried that I would hemorrhage. All I needed to do was just please keep quiet and rest - he'd be back first thing in the morning. I was thinking he had enough to worry about and just tried to put it out of my mind.
As OB floors go, people of course come and go - and eventually I had 2 other roommates with me by about midnight. In the meantime, I had stabilized enough that they let me finally sit up and make a few phone calls. I called my sister to tell her about the baby but it was just niggling away at me that they would not bring him to me. She pretty much told me to quit worrying about it as did my mom when I called her - that I was making too much of this whole thing and just needed to be patient. It was probably some totally small thing and I was just working myself into a lather over nothing. Easier said than done when you know something is wrong but you just can't figure out what!
The Truth Revealed
A pediatrician literally woke me out of a sound sleep before dawn the next morning as he brushed aside the curtain of my cubicle in the hospital room and shook my foot to wake me. I was vaguely aware of the other 2 people in their beds definitely within hearing of the most startling news I think I would ever hear in my life - delivered rapid fire as if he could not wait to get out of the room. No introduction, no softening the blow but I guess that is better in retrospect. He just blurted out 'okay - I examined your baby and there's definitely something wrong - he's missing an eye...and the other one doesn't look too good either.'
All I remember is thinking it was a dream - definitely a nightmare and that I would be waking up any minute from it. Then I remember the tears - falling silently as I struggled to grasp what he was saying. Certainly this could not be the truth - it just didn't happen. If it did, why hadn't I heard about it before? As I struggled to try and gain some composure without breaking apart into a million shards of grief, he just patiently stared at me as if he needed me to get hold of myself and toughen up. So I did. I finally was able to speak and asked him all the questions I possibly could think of as they flew through my mind - was he going to be totally blind? Was he going to have a normal life? What caused this?
Obviously, this doctor was not at the head of the class when it came to bedside manner so I received relatively little in terms of information. Poor Bob had made arrangements to be at the hospital when the doctor was coming in to examine Patrick but somehow the doctor had beaten him to it and was long gone by the time Bob came flying into my room outraged beyond belief that the doctor had barged in and given me such bad news so abruptly and so alone. The other 2 poor girls in my room were still speechless. I think it traumatized them nearly as badly as it did me!
At any rate, I have to say that day I grew up 10 or so years. I suddenly realized that all the trivial things in my life up to that point (a ripe old 24 years of age) meant nothing. All I could see and all I could feel was overwhelming grief for all Pat would not possibly be able to do or what kind of challenges his life would hold for him. Why had it happened? Not to me but to him? It just seemed so unfair. It also suddenly hit me how we so take for granted our perfect babies and what a truly wonderful gift they are when there is nothing wrong. All of a sudden in the space of about 12 hours, all of our lives had taken a shift that none of us had anticipated.
I will say though that in that early morning, finally holding my little boy and trying to look down the road and see what our lives would be like in the years to come, I could never have envisioned (of all the words) what a treasure I received that day in giving birth to Patrick. Even though it was so hard at first, and even though it felt like my heart had been ripped open, I did decide that day to make sure that Pat was going to have everything that life could offer in terms of exposure to the world, love unlimited, and that if it should turn out that he was completely blind - it would not matter a bit.
In the video about Max, they had time to prepare for it and I'm not sure that that would have helped. That would have been extremely difficult as well to have known. I would never have considered termination as an option either. (They are a remarkable family) In fact, when I got pregnant again after Patrick, we had been told by this time that it was probably a genetic defect though at that time, it was EXTREMELY rare. There were no support groups because no one knew there were any other children LIKE our son. I had an ophthalmologist tell me when I was pregnant with our third child that I should have had an abortion and that probably our baby would be born with no eyes.
I can honestly say that the day Kate was born was perhaps one of the most joyous in my life. I had come through the pregnancy a little worse for the wear with worry. We had not planned another baby and then to be faced with the possibility of the defect being bilateral, we were a bit shell-shocked to say the least. However, abortion was never even thought about. By this time, Patrick was 17 months old and even though it was extremely difficult and he required much more than the usual baby care and attention, etc., it was never a burden. It was actually an inspiration to see him growing and changing into the person he would one day become.
The day Kate was born, I again managed to somehow fly through labor and before I knew it, I was going to be facing the reality of another possible birth defect. Everyone in the delivery room, including Bob was trying so hard to distract me and make me feel good when all I wanted was to see my baby and know the truth. Since she was to be our last, I knew that it would be a milestone no matter what happened but the long wait had about killed me. When she was finally delivered, I did not notice that she was a girl - I did not notice anything but began peppering my poor doctor and Bob, anyone who would listen with 'does she have eyes? Please look at her eyes!'
I don't think I'd have liked to be that poor doctor that day. He was literally a nervous wreck as I have no doubt he was worried as well. He had recounted to me a 1 in 4 chance of it recurring and it being bilateral. But bless his heart, he was brave and he looked - and when he smiled and gave me the verdict that there were in fact 2 BEAUTIFUL eyes and oh by the way, did I happen to notice that I had my baby girl....I whooped and hollered and made a general spectacle of myself. Bob was trying to quiet me down out of total embarrassment but somehow the staff all understood and started to whoop with me. I always tell Kate that I loved her the day I met her because it was such a celebration in the delivery room.
What We Know
My story is not unique and I realize that. There are so many babies born around the world these days with birth defects. That is a frightening thought right there - and they seem to be on the rise. I have burst into tears watching TV programs where children with lesser defects than our son's are left to die. How blessed I feel to have had my son!
Anophthalmia/microphthalmia which is what our son has is a rare SOX2 genetic mutation they say. However, now it is far more prevalent than it was 31 years ago when we had Patrick. They are strongly leaning towards environmental factors as the #1 cause for this defect and more research is needed desperately to determine what is causing it and stop it from happening. As with autism that is on the rise, why are these defects occurring at such an alarming rate? Why are there so many birth defects in the Arab nations occurring? One has to believe it has something to do with what we are doing to the environment.
The wonderful groups that have sprung up over the last decades are simply inspirational - the families that have gone through what we went through so long ago have shown their courage in ways I could not even have imagined. I know because we have been there and walked in their shoes. They have made it better for the next family that has this happen to them and for that, they receive my gratitude. I would have embraced these support networks and would have found such solace in other people being in the same place and dealing with the same issues.
The opportunities and services available now are remarkable compared to what we had in our journey but I for one am so happy that they are there now for these special children. When we were going through our situation, we had a fight on our hands at every turn but it was well worth every moment of it! Getting services for the handicapped should be a no-brainer. Low vision and blindness are so misunderstood and there is a lot more turf to cover.
I believe having a child with a birth defect is a godsend in many ways. I never thought I would say that but I truly believe it. It makes you acutely aware of all the gifts that we 'normal folk' take for granted every day. It makes you take a long hard look at yourself and decide whether you can step up to the plate or you can fold. I like to think most people with a child with birth defects come out on the other side a better person - probably more stressed and more physically tired - it is a long and tedious journey raising someone with a 'handicap'. However, the rewards in the end far outweigh the tribulations of the journey. You see life from a different perspective and at least for me, it taught me never to judge any situation or any set of circumstances because it always can happen to you!
There are many more parts to the story - this is just the start of our journey with Patrick. He was born with one eye that did not develop at all (just a nubbin of tissue was in the eye socket) so he has a prosthetic eye. His other eye was severely damaged as the eye itself did not fuse all the way. He is in effect legally blind for all intents and purposes - but a more gifted and wonderful person I have yet to meet. It still staggers me to think of my little baby as being 31 years of age and to see how far he has come! It proves that old saying to be true - 'the best is yet to be'.
How Families Cope
One Amazing Family's Story
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Links To Understand More About Anophthalmia and Microphthalmia
More Links On Birth Defects
- My Unborn Child has a Birth Defect
Faith at Prom Faith and Firetruck Faith with Sister Faith at Play Faith - Just like the other girls her age!!! A day that I will never forget. It was 19 years ago today that my first child was born. She has... - CHD - The Most Common Birth Defect
Congenital heart defects (CHD) are the most common birth defects. CHD affects 8 out of every 1,000 newborns. Each year, more than 35,000 babies in the United States are born with congenital heart defects....
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Audrey,
I can't believe it has been six months since I have updated you. I was sitting down working on somethings on my computer for Braille lessons I am getting ready to do for a gifted class for the school I work for and thought I have not been on there in so long, I need to update her.
Things are still going great. Cheston had surgery in August where they removed the cyst in his right eye. They did remove the eye and put an implant in. In November we went and got his prosthesis. He looks so handsome with it in. The ocularist painted it to match mine, blue! The boys are 11 months old now. I can't believe how fast time has went by. Cheston is a whopping 22 pounds now. He is such a creature of habit. He loves his morning blueberry pancakes. He waves to everyone and just loves life. He enjoys all the kids he plays with daily at the day care and claps all the time. He is such a happy boy. He has become a local celebrity. The local newspaper did a story on him a few weeks ago and we were so pleased by how it turned out. Clayton is still a mama's boy. He is cruising everywhere. His sister calls him "stinker" and she calls Cheston Chessy boy.
Cheston is having his left eye and cysts removed on March 13. Then we hope it all goes as smooth as it did the last time and he will get his prosthesis this summer. The one difficulty we are having now is the moving. He sits up and stands up when we place him on objects but we are having a hard time motivating him to move. We know it will eventually come with time though so we are trying to be patient.
Life is wonderful and getting better everyday. It is still hard and I still catch myself crying sometimes when I am by myself but I know everything will be fine. I wish I could send you a picture of him. If there is anyway we can do that, let me know and I will try and do it. Thanks for listening and hope all is well with you and your family.
Remarkable story, James - so glad you have the privilege of knowing someone who is sight impaired. It's not the end of the world most assuredly and in my Pat's case, it gave him so many gifts. It seems that once a sense as they say is removed, your other senses heighten. Music is a natural for him as well~ Thanks for sharing my experience with me!
Thank you for sharing this incredible story. The guitar player in my band for sixteen years (the one who plays on my music posted here on Hub Pages) lost his sight a few days after he was born in 1954. Apparently he was born prematurely and they gave him pure oxygen to keep him alive, which burnt out his optic nerves. He is the most wonderful man I know and we spent years traveling together on the road playing music.
Jwilson~You are to be commended - you have made it through the fire~! It will not always be easy by any means but you didn't look back - you looked forward. That is the BEST thing you can do - and to see your little guy's achievements and applaud them. These babies are literally the sweetest things you can ever receive. I was just talking to someone today about Pat when he was a baby and how I just laughed and laughed because of his good nature and his ability to make ME feel better!!
I wish you could be home always with him but you'll be okay - I found solace in working (although I worked at home) and getting them into the mainstream of life is the most important thing. All the organizations and help you will get will be with him throughout his school life which is very, very important - in fact vital. It also puts into place help later in life so this is good!
You took a negative and turned it into a positive - I am so proud of you!! I've been there and done that so I know how hard it truly is - but making lemonade out of lemons to me is the great choice of life. I will pass on to Pat he is an inspiration - he always has been and lest I forget that, you reminded me again today~! Hugs and hugs again to you and yours!!! Please keep me in your circle!
Audrey
akirchner, I know it has been a few months since I have responded. I have been busy!!! Things are going so wonderfully. Cheston is such a happy happy boy and so is his brother. I am sleeping through the night and have been for a couple of months now so life is getting better! They are now 4 and a half months old and getting big. Cheston has had four sets of conformers put in. His ocularist is very pleased with his progress. We have an orientation and mobility specialist who comes to see him twice a month and she says he is the best baby she has ever worked with. He holds his head up very well, and rolls over all the time. He put his pacifier in his mouth all by himself last night and we all cheered. He smiles all the time and talks A LOT!!! We have registered with many state support groups and parent support groups. He is having surgery in two weeks. He has a cyst that needs to be removed and the surgeon is concerned that the cyst is attached to the eye that is there and we have been warned that it may have to be removed and an implant put in place. We count our blessings every day for our three wonderful children. I have enjoyed being home with them all summer but that ends next week. It is back to work!!! I just wanted to update you and wanted to thank you for the encouraging words you gave me when I was at my worst moments!!! You are an inspiration and so is your son. Please tell him that. We know our son has a very bright future ahead of him. Thank you again.
Celebritys4africa - You are too kind - I certainly am not perfect but indeed I am the one who is blessed. Thanks for your sweet comment.
You are so brave and your kids are blessed. You are a perfect mother.
Jonie - You sound like you totally 'get' what you need to do for your little sweet boy and that is the most important thing in the world. You will do just fine - all of you will come through this test of fire and probably be even stronger for it.
If you want a suggestion that I found helpful, I was living in Chicago at the time and through the services for the blind (there are many ways to connect with them all over the internet and even in the phonebook), I got him hooked into a Birth to Five program. Best thing EVER and he did so remarkably well. They teach you how to teach your child - in terms of seeing, mobility, balance, etc.
It is true that you may not know what he sees for a very long time.....that was the most frustrating part to me as a parent but it just takes time and patience...something that is not MY strong suit.
As I said though...the journey is worth it all because you will be more than surprised how grand your son turns out to be. His other senses will take over and he will become someone so special everyone who meets him will be drawn to him and impressed. That's the way our Patrick has turned out and I believe it can happen for all of these kids. A handicap is only a handicap if we believe it to be one - Pat taught me that!
Thinking of you every day - and reach out whenever you want to!
From the way I have understood, they are doing the VEP to see if there is any vision in any eye. The doctors have not told us in anyway what they think he will be able to see and we know nothing as far as that goes. As of now the plan is to put the clear plastic conformers in and then once his facial structures are formed, then we will need to decide about the prosthetics. Which is great news and he will get to utilize any vision he may possibly have for now. The doctors have said we may not know what he sees until he will be able to tell us. I am happy as of now what the doctors have lined up for us. We go for the conformers april 6th and have 3 other appointments that day and the next day with the surgeon, genetisists and to have the VEP done. The doctors have been very realistic with us which is what we want and have said that they do not think that there will be any vision in his left eye because of its shape and size.
We are doing so much better. Our community and churches and both my husbands work and mine have been very supportive. What I ask of now is for strength not only for him but also for my other two children. My biggest questions and concerns are what do we do for him educationally and when do we start all that. I know that there are resources that we need to seek out but I do not know where to begin in that process. I have some decisions to make myself as far as childcare for him in August when I have to return to work full time and of course I am seeking resources for myself for ways to teach him.
Both my boys are very sweet and precious and that is what I am trying to embrace and enjoy now. We got their pictures taken today and they are just precious. I am trying to keep things as normal as possible for all of us. I really appreciate my chats with you and knowing that there is someone out there that has went through this as well. And for that I thank you.
Jonie
jwilson - I'm not sure I understand the process in your case. Are they saying they want him to use his 'rudimentary' vision and then not place prosthetics? I guess that would make kind of sense and why they are doing the VEP. That is way more sophisticated than when our son was born 32 years ago!
Are both eyes then small? And they are testing to see if there is sight in either one is what I'm thinking? If you put in prosthetics obviously he wouldn't be able to see then.
On the other hand, you are right - without the conformers, etc., his socket will remain small and could possibly shrink so his face would not develop 'properly'.
That is a hard thing to hear but I think I'd try and wait for that VEP and see what they can tell you from that. However, all that said, this organization is a great one for anophthalmia and microphthalmia - I'd venture to say that I'd give them a call because they should have the most up to date information. Of course, every case is always different but there are certainly other folks out there who might have been through it more recently or have the same set of circumstances as you have with your son? These folks are in Philadelphia and are wonderful with resources and advice in my own experience dealing with them as a support person years ago.
http://www.anophthalmia.org/research.shtml
Please - if you have any more questions, write me again and I'll do whatever I can to listen or give advice though I realize that times have changed a bit since 32 years ago! In Pat's case, his one eye formed 'pretty much' though it is missing parts of his iris, retina, etc. so he has a nystagmus. But his other eye was just a rudimentary orb so there was no vision possible.
Anyhow - keep me posted and thinking about you!
Audrey,
We went to the doctors appointment yesterday. We learned that he does have very small eyes in both eyes. They did an ultrasound and the doctor said that they were the size of a pencil eraser. We are scheduled for a VEP which is where they will test the brain waves connected with his vision. The doctors said that we would have some decisions to make when it comes to the conformers and different things. We have been in contact with a hospital in Memphis and know we have some options there to look into. We just know that we will have some hard decisions to make as to what we do next. My most concern now is will we make the right decision because we want the best of both worlds. We want him to utilize what vision he has which we know will be very limited and have his face grown normally. I just don't understand why we can not have both. If you know of any resources or options there are anything would be great. My husband and I know we have 3 very special children and they will all lead very healthy and happy lives. That is all we want for our children right now. We just want to do it the best way possible. Thanks for the listening ear.
Jwilson - Thinking of you since you wrote so no problem thinking of you some more! Will keep my fingers and toes crossed that you get good information on Monday.
I have a hub somewhere on here too about learning toys for blind and visually impaired kids and I even write funny hubs about some of the crazy things that happened to my Pat. I've always found that by having a happy heart, it made it that much easier. That said, though, it took my husband and I about 3 or 4 months to actually 'absorb' what had happened. We had a 2-year-old son at the time with ADHD and to coin a word, our life was 'priceless' for a bit there!
It all worked out though and I have to say that Pat's experience actually probably made me who I am today. It taught me a lot about what I could do as a person and it also taught me about one very important thing - sometimes people who are born with something like that through no fault of their own (or anyone) just turn out to be such inspirations and such remarkable people.
Back to the baby part though, you as an educator will do even better than I did probably because you already know many things that I sort of figured out. You don't need 'special' toys or things for these kids - you just need to stimulate all their other senses to make 'up' for the one they are lacking in.
There is a great on-line site I've looked at many times for some of my pieces and will probably tag in another piece down the road. It is http://low-vision.org/ - terrific for information and even think they have some visuals on how people see who are visually impaired.
We still don't know how Pat sees but the fact of the matter is, he seems to do very well for someone who is legally blind! It does help that he also has a good attitude and a jovial heart. It's not easy by any means for him in the world but he never complains.
Anyhow....wishing you much luck and good news. Keep me posted, too when you can or if you'd like.
Audrey
thank you again so much for your inspiration and hope. We are at the point where we will work with what we have to work with and do whatever it is we need to learn to give him the best and fullest life possible. We have two great supportive families and communities that are praying for us which is such a blessing. He knows my voice already and my touch. We have a three year old daughter and I am trying to show her how to show him who she is. I have this bookmarked as my #1 favorite place to visit and it has been such a help with me talking to you, someone who has went through this also. If I have any questions, I will for sure contact you. Our next obstacle is Monday where we can get a better grip of the situation so please keep thinking about us. I am going to focus a majority of my summer finding ways to educate myself on what I can do to work with him. We live in such a rural community that resources are very limited in things like this but I will do what I can to make it work. Again, thank you so much.
Oh Jwilson - even 32 years later, I remember all those feelings! Anything you'd like to know, please just ask and I'd be happy to answer you from my own experience.
That is fantastic that you had twins! My Pat was special from the moment I met him and he still is. It's not the end of the world by any means especially since there are birth defects that are far "worse" but it is devastating at first. You just don't (to coin a word) "see" it coming and you can't really believe it happened.
Because no one could really tell us what Pat saw with only one "good eye" and that being pretty shot (he developed a super fast nystagmus within a week or two after birth), I decided I'd go from blind to whatever he could see. I used every modality I could think of - sound, touch, smell and just worked with him and worked with him.
We also got him into a birth to five program in Chicago and they taught me more things - like balance and visual techniques to enhance what vision he did have left.
Long story short, he played sports (I didn't always like it though) - he rode a bike finally by himself - he participated in language and music (his definite niches in life) and he has never been afraid of anything. His mom on the other hand....well, that's just natural I guess.
Wishing you every joy with your two boys - and again, if you have any questions at ALL, please write to me and I'll be happy to advise on anything!
thank you for your story. I just gave birth to twin boys 2 days ago and got released from the hospital and was sent straight to the pediatric eye specialist where he confirmed one of my sons has anophthalmia in one eye and microphthalmia in the other. We go in one week to see another specialist. He is a very very healthy boy and so special already. I work in the education field and I want to do anything I can to help him have the fullest life. I am still in shock and very upset but I want to find out whatever it is I can to help him. Any help you could give me would be wonderful. Thank you for your story, I needed that inspiration.
Leah - That is AWESOME! From tragedy can come the best of things....and it wasn't even tragedy really. It was just the shock factor and what do we do?
God they teach us so much! My sister is an interpreter for the deaf and I always think that is kinda ironic.
Our Pat is quite the treasure and I imagine your Nolan will be the exact same. You won't believe what they can teach you and you'll never be the same again.
I like to think it is all part of the journey. Wishing you all (and Nolan especially) the very best life has to offer. He can't go wrong with parents who love him and treasure him which it sounds like you truly do!
Your article is very touching. It brings back my memories of sitting in the hospital room waiting for the nurses as they kept my baby for a longer-than-normal period of time. In our case, his eyes were fine; his ears just didn't work! Those early months of grieving, wondering if my baby would even hear my lullabies are now a blur. Technology has come a long way for hearing loss, and we are constantly inspired by our little boy. Nolan is growing like a weed, talks non-stop, and sings at the top of his lungs. Life is truly beautiful.
Beverly - I'll tell you from the heart that Patrick is the best thing that ever happened to me. I grew up in a less than perfect childhood but NOTHING could have made me understand life more than my son Pat. He is just amazing - at 32 he still makes me say he's my inspiration.
It doesn't matter what your line of support is - actually my husband has always been my best guy of all time on ALL levels. We had the opposite - our family just didn't 'get it' at first and for many years afterward but we had each other so that was our support network.
Strangely, I just had this conversation in the last few days with my mom - but I set about 'making'/allowing Pat to be the best that he could possibly be - and he led me the entire way - he still does.
When these kids come to us, we get a real view of things like what sound means and what other senses mean and it is all a total learning experience. What started out as a tragedy (the shock factor) ended up being one of the most HUGE blessings of my life. I don't know what I (or our family) would do without my Pat.
I wish you and Whitney every joy that I've experienced over my lifetime dealing with something but coming to know it not as a handicap but as a learning experience and making me see what truly matters.
Happy New Year to you and Whitney and yours!
I love this hub. My daughter,Whitney was also born with bilateral anophthalmia. I didn't find out til she was born but she was enrolled w/Helen Keller Early Intervention before she left the hospital a week later. We,fortunately, live 20 min from the best blind school in Alabama. She also has a few developmental delays but like Max she is so happy and has amazing personality! God truly blessed me and she changed my life forever. You are fortunate to have a supportive husband because tho I have amazing family I am a single full time working mom of 2 kids and she does require a lot extra but you can't imagine the joy I feel knowing I get raise such an amazing child. My hopes for her are to always be independent, to love everyone,no matter how ignorant they can be and to always dream. Happy new year! (Whitbev1020819.bm@gmail.com)
Kim - Thanks so much for your sweet comments and let me know if you find anything out! If you read the comment right before yours, it obviously is still happening after all these years!
I think they didn't tell me right away because they were freaked out partly - poor Bob finding out like that. And I think the other part was me hemorrhaging or thinking they were going to have to take me to surgery. I also think some doctors have the sensitivity of a razor blade. I do wish he'd thought of some way to tell me that was a bit more kind. I'll always remember the deathly silence in the room as the other 2 girls heard every word and didn't know what to say when I began quietly crying and he walked out. My Bob of course was furious!
But ya know, life has a way of taking a 'tragedy' or a thing you feel is insurmountable and turning it into hope, joy and pure enjoyment. That's how my Pat is. He is just a treasure. He has a great attitude although his lack of sight is catching up with him a bit these days as getting about in the world is very hard for him. But as a person - hands down one of my favorite of all time. He has a great sense of humor (he should with parents like us I guess) and we enjoy him thoroughly.
Thanks again for your kind comments!
I don't recall ever hearing about this birth defect, Ms. Audrey. Thank you so much for sharing this emotionally moving experience. Now I feel compelled to look more into this genetic birth defect. I'll have to do some research when I get the chance.
It's unbelievable how the medical staff tried to hide your son's condition from you. I mean, it's just... strange. Isn't that more stressful keeping the information from you rather than just telling you in the first place. That's just odd.
On a more cheerful note, I'm happy to hear that your son is doing well. Happy Belated birthday to him and may he have many more joyful years of life! :)
Oh Valerie! Even though it happened to me about 32 years ago, I still feel it like it was yesterday. Luckily, my Pat didn't have to have surgery. His 'good eye' is very broken and he has a cataract that is developing. They are not sure that he will be able to have surgery because of the deformity of all the parts of the eye but that's another story.
I just know that these wonderful people come into our lives for some reason. I always tell Patrick he is my inspiration and without him in my life, maybe I wouldn't have learned all that I have learned! It was so frightening in the beginning but he turned out to be so talented. He was a straight A student, so talented in everything. He played sports (soccer and a few others- I didn't like it one bit - but he would not say no). He skied, he rode horses - and he is legally blind. He is a fantastic musician and smart as a whip. He was such a joy to us that again, I wouldn't have traded it for the world.
If you want to keep in touch with me please DO - I'm here for you and your daughter if you'd like. I can give you whatever info I know though so much probably has changed. Where in the part of the world are you folks? Getting adequate care from the beginning is the main thing - and getting these kids all the help in the world in terms of mobility training, training whatever sight they have left, etc. I have a few other hubs on here about toys for low vision children which really are the same as for any other child with some modifications. I also have hubs on here about making prosthetic eyes. My boy just had one made and is having the finishing touches put on on Friday.
Sometimes from the depths of sadness come the most beautiful people and I'm praying for Marcus to be one of those survivors. Bless you all - you'll be in my thoughts and keep in touch if you'd like! There are support groups out there too which they didn't have when we were doing this which is SO cool. Give my best to your daughter too - and a kiss for Marcus.
My grandson, Marcus, was just born 11/11. He has micropthalmia in both eyes and he will have his first surgery tomorrow (12/8) and only then will we know exactly what we are facing. Marcus cannot open his eyelids so we don't know exactly what is there yet or if there will be a chance for any vision at all. I would love to have a real conversation with someone who has gone through something similar and learn a little about what we might expect. I still feel in shock and am so heartbroken for my grandson and for my daughter and am trying to look at all the positive things there are to be grateful for. He is truly a beautiful baby and deserves all the opportunities life has to offer and I don't want to miss any possible miracle!!!
Leola - That is amazing and sad all at once. I feel for your daughter and for your family. Patrick has been so blessed that he is 'fairly normal' and has led a very active life, in part I think because he had so much training and people have loved him so much. He went on to become a great musician and has so many gifts. He is 31 years old now and it hardly seems possible. He is my inspiration every day and as you say - we can't understand sometimes how this 'happened to us' or to them, but it is not our call to make. There is a reason somewhere in it I believe and maybe for me, the reason was to teach me the meaning of courage under fire. I will send out prayers and thoughts to your grand babies and your daughter. Thanks so much for visiting.
akirchner i know what you are saying my daughter has had 3 children a precious boy 18 months and twins 5 weeks the boy has trunkess main arties in heart were joined and had to be seperated the twins one has a left plastic heart and has been in icu for all her life she has half a heart and her sister has holes in her heart which need mending this has been a strain on all the family and if we didnt have Jesus to trust in i don't know where we would be.the little boy brings so much pleasure to everyone he meets he has a special gift from God and the girls are like baby born dolls people are drawn to them God has special plans for all His children and lately i feel it is better to have half of something than nothing at all meaning i would sooner have them sick as they are than to loose them i love them so much and thankGod for them every day
Terri - Thanks so much for stopping in and isn't it just so? You can't do anything about it nor can they, and I just had such an inspirational tutor in my life having Patrick. He is a wonderful person. Best to you and your daughter as well!
Love your last comment. My daughter has bilateral anopthalmia and it really is just a matter of learning how to do things differently, not the end of the world. Best to your and your son.
Perhaps - but since my son was born with that, it is not so horrible. You just have to deal with it and since he is 31 years old and doing well, it's all 'good'. You get what you get in life and it is all a matter of learning how to cope or deal with it I guess. Thanks so much for reading but it isn't the end of the world in my humble opinion.
Horrible to read about things like that :(
Thanks so much for the kudos but really, Pat deserves all the credit - he has become my inspiration over the years and will write more about him here soon and all the learning to live with low vision. It is such a misunderstood thing among lots of folks in the population. Mostly, I just think we take for 'granted' sometimes how lucky we all are - I know I certainly did! Thanks again for your wonderful sweet comments! Audrey
You've written a heart-wrenching story here...one every mother panics over when she's in the delivery room...is my child okay? Kudos to you on your bravery for Pat's 31 years, and to Pat, you sound like a remarkable man in a loving family! Love and hugs to your entire family! Always, pzazz-linda
Thank you so much - my whole life has been an amazing ride but I'm of the belief that things always happen for some reason and it's not about the cards you are dealt but what you do with them! Thanks again for stopping by!
This is an amazing piece of your life... thank you for sharing it with the world and for helping to spread awareness.
Thank you for sharing, too! My husband has a grand niece who has spina bifida and she just turned 13. That is a tragic birth defect as well but some of the people who I've known over the years with it are so inspirational as well. It is amazing what people go through sometimes but I always think there is hope. At least now with spina bifida they have unlocked that particular mystery. I only hope and pray that they will do more for other birth defects such as autism, etc. which is so on the rise! Again, thank YOU for sharing!
Thank you so much for your hub. My 12th granddaughter was born with spina bifida and she is so special to all of us. She will not be able to walk, but her parents are learning how to care for her. I wrote a bit about it on one of my hubs:
One of the Oldest Women's Organizations in the World
Thank you for sharing your experiences with us.
Thanks - it made me teary eyed to write it and have more parts of it but have to space those out so I don't sit and cry. Not that it was a bad thing - it was a totally inspirational thing (still is) - it is just so hard sometimes to convey to people. But there are so many families still going through this and that they are not alone is the coolest thing of all....and that our son could grow into such a fine person who is so non-handicapped it makes me crazy!
Thanks again for the tag!
Audrey
Oh gosh, I am teary eyed as I read your hub. One thing I do know it is a blessing for the kids to have a mother like you to love them for who they are - imperfections and all. I rejoice with you in the love that you share and the wonderful journey of growing with your kids.
Much love and delight akirchner.
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You guys are too sweet - it never was a choice for me - much like the dogs I seem to attract like flies - I just love and I love madly and passionately. I can't even tell you what a thrill it was to have a child after Patrick even though it was so frightening at the time. It also helped me by having our oldest boy actually - he has ADD and I always laugh and say it kept me from sheltering Patrick too much....he is an inspiration but then all of our kids are to me! Thanks again....
Hi, it's me again. I am amazed by your bravery and how you took the whole situation on board and were brave enough to go on to having a little girl knowing that it could have happened again. your amazing love Nell
Thank for a wonderful hub and tear jerker, thank you for sharing your most precious moments with me. God Bless you and your family. creativeone59
akirchner Hub Author 3 months ago
Cheston sounds like a trooper and I'm sure he'll surprise you even more as the years go by.
You can email me at akirchner@prinetime.net directly if you'd like...picture welcome~~~
If you CAN possibly connect with a mobility specialist (they started Pat at 6 months old so never too early) through special education or services for the blind, you'll find that he'll move along (literally) quite rapidly. It left to their 'natural' protective senses, these children do tend to become overprotective since they cannot see or see poorly and they don't develop movement skills that they will need as rapidly. Patrick resisted most everything we did (at first) with movement and stimulating the vision he had left but in the end, he says now "he is a smarter seer" as he has learned so many coping skills and compensatory techniques that that is what has helped him lead a fairly successful/normal life.
Don't worry about the tears - it is a loss that is hard to deal with finding out that our children are born with birth defects. I think it is one of the hardest things in the world to understand and cope with - no matter HOW much you love them and are thankful for what they DO have. It is just a coping mechanism I think to release it through tears. I cried for a long time by myself because no one understood what I was going through and sometimes they said things that while true, really were hurtful - as in "it could have been worse," "look what he DOES have," etc. Easy to say when it is not your child and your world is turned upside down. I can't imagine having 2 kids the same age and going through it though my oldest had ADD and was 2 when Pat came along. I always say THAT kept me from being sad long because I was constantly on the move!
At any rate, keep in touch and I'm so glad the surgery went well. Ocularists are my favorite "artists" of all time- it truly is a wonderful gift. They are usually the most remarkable people as well I've found. Thinking every positive thought for little Cheston -and write any time! Audrey