Babies Born Without Eyes
When 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.
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.
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 to 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.
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!
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
Help Sources Available Here On Amazon
More Sources On Amazon
Links To Understand More About Anophthalmia and Microphthalmia
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