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Grieving “Perfection”

Aug04

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A couple months ago, Quinn emailed me with a topic suggestion for Bounce Back — a topic that was near and dear to her heart, a topic that NONE of the pregnancy or baby books covered, a topic that a lot of parents probably don’t even want to think about — birth defects. They happen. What do you do when it happens to you, to your baby? How do you deal with something that can color your entire birth and postpartum experience with your newborn…without letting it color your entire birth and postpartum experience with your newborn?

And so I wrote back and said yes! I think that is a fantastic, often-overlooked topic for new parents. Now help me write it.

Not only did Quinn offer to share her story of Baby Griffin and his “lucky fin,” her husband Steve went ahead and answered my questions as well. I’m going to tell you right now: I think this is the best post yet, and I can say that because I didn’t actually write it — I just handed the reins over to a fantastic couple of people. It’s a long but worthy read, I promise.

AMY: Okay, so first up: details. Tell us a little about your son and what happened at his birth.

QUINN: Griffin was born with a unilateral hand malformation due to failure to form. He doesn’t have a left hand, just a wrist and five little nubbins. We don’t know why. Arms grow out from the torso, lengthening and then splitting into fingers. For some reason his left arm just stopped growing after the wrist, although it still split and formed the nubbins. We know it’s not inherited, or related to any other idiosyncrasies, or due to anything I ingested or was exposed to. It just happened.

We didn’t know about this before he was born. We’d had a pretty uneventful pregnancy. We did the triple and quad screenings and the standard twenty week anatomy check, like most people. We’d skipped the amnio and CVS because I’m under thirty and neither of us has a family history of chromosomal disorders. We’d been planning on getting a for-fun 3D ultrasound, but we switched from an OB to a midwife in the beginning of the third trimester and I was laid off and it quite simply fell off the bottom of the to-do list. A 3D ultrasound might have shown the malformation…but it also might not have. Ultrasounds aren’t perfect.
I started getting a little borderline preeclamptic towards the end, but I went into labor spontaneously at the end of the 38th week and did the whole no meds, water birth, damn hippies thing. I was in a hospital because my husband and I liked the whole idea of nearby ORs and incubators.
I noticed his hand kind of in waves. He was in front of me, screaming, and one of the midwives was yelling to hold him in the water but to keep his head above the water, and my brain was shattering at the idea that this was my son in front of me. I suddenly thought that I needed to count his fingers and toes because it was tradition…and I kept getting hung up after the first five fingers. Eventually I realized that he only had five fingers.

griffin1.jpg

STEVE: He came out and started screaming. I said oh my god, oh my god a few times. I had about 10 seconds of unbridled giddiness and amazement. Then Quinn said, he has a club hand… look at his hand. Look how little, it looks like a foot. The midwives and nurses didn’t say anything, they kept working, checking his apgars, cleaning him off. They whisked him out of the bathroom to the heat lamp and I followed him. Quinn was bleeding from the tearing but she was able to walk to the hospital bed with help. I asked a nurse whether someone would come to talk to us about his hand and she said they would. I held my wife’s hand and told her everything would be okay, and she smiled wanly at me, but she was being sewn up and we were both exhausted and neither of us actually knew a damned thing.

AMY: I can’t even imagine all the emotions you must feel in those first moments — we all want to immediately declare our babies “perfect” and “beautiful” and so I’m guessing there was a certain degree of…disappointment? Guilt over that disappointment? Something akin to the seven stages of grief?

QUINN: I’m really glad that you’re referring to the grief stages, because that’s exactly what it is. You’re grieving the idea of the perfect baby, the baby you expected. No baby is perfect, but we’re allowed to think most newborns are because we don’t know them yet. When you have a baby with a birth defect you have that illusion ripped away from you pretty roughly.

After it sunk in, I had some really confused, dark emotions. I loved him, but…that wasn’t the overriding emotion. There was regret, and a lot of disappointment. And there was a lot of fear. Fear that he wasn’t well, fear that I was going to be a special needs mommy. I didn’t want to be a special needs mommy. I didn’t think I had it in me.

I became TERRIFIED that this was the tip of the iceberg. That there was something terribly wrong with his brain or his internal organs. I could almost hear our Mystery Diagnosis voiceover: “Griffin Matuszek was born without a hand. DOOM.” The pediatricians all said his heart and lungs sounded normal and he was peeing and pooping fine, but that was all they would say–they just didn’t know anything more. I felt like we were handed our baby and told he was one-handed but perfectly healthy! They think. Maybe. Go ask someone else.

The next few days were pretty intense. We held up pretty well in front of people, but when they left we fell apart. I was determined not to cry in front of anyone except my husband–I was afraid they would think I was a terrible mother who didn’t love her baby–so I spent all the time I should have spent sleeping crying instead.

I also blamed myself for making him wrong. I was worried my in-laws, who are wonderful people so this is ridiculous, would hate me. It took me a long time to get through that. Ultimately it wasn’t until I got reassurance from a whole bunch of doctors and reputable websites that it wasn’t my fault, that this just HAPPENS, that I really began to believe it.

STEVE: It isn’t akin to the seven stages of grief, it IS the seven stages of grief. We grieved for the hypothetical perfect baby who died when he was replaced with the baby we actually got.

Someone would explain that to us later, but I think I had already figured it out when I caught myself in the bargaining phase. I’m agnostic, so I had no one to bargain with and nothing to offer, but there I was sitting alone in the car in the parking lot (where Quinn wouldn’t see) sobbing my eyes out and begging desperately for the hand to be the only thing wrong, for him not to have a hole in his heart, not to be mentally retarded.

It would be a day or two before we were reasonably assured that there was nothing else wrong with his body, and much longer before he (or any baby) would start doing the things that indicated that his brain was functioning normally. So fear was the strongest emotion for me.

AMY: How did you tell people? Did you tell people first thing or wait awhile? Did anyone say something unintentionally terrible before they knew, like that “10 fingers and 10 toes?” question people always say in kind of a joking way? How did you handle stuff like that?

QUINN: Well, we’re geeks with Facebook and Twitter accounts, so…we made a webpage. My husband dashed together a simple text page announcing Griffin’s birth and linking to Flickr, and included a simple warning that he had one hand but was otherwise healthy. We didn’t want people to feel they couldn’t mention it, but we also didn’t want to draw too much attention to it.

I texted my close friends and family. I sent one text saying that he was born and all was well, and followed it up saying that he had one hand.

AMY: How did you feel about taking photos and/or seeing the defect in photos? Were you ever tempted to crop it out or did you feel it was important to really photograph your son as he was?

QUINN: I was pretty adamant that I wasn’t going to hide it from the start. Although…I didn’t exactly mention it in the email to my former coworkers, and the best picture just HAPPENED to have his hand tucked up under his chest. Ultimately it IS important to accept the birth defect, but it’s okay to give yourself time to process things.

STEVE: We told people immediately. I told my family and my boss via instant message and my best friends and coworkers via e-mail, all before leaving the delivery room. It didn’t occur to me not to.
No buildup, just “He was born with an undeveloped left hand.”

These two questions sort of have the same answer, because we had our smartphones, and a laptop in the hospital room, and people were going to expect pictures in e-mail and on Facebook right away anyway.

It did make me feel queasy to look at the hand, back then. It really does take some getting used to. So I kind of liked the photos where you couldn’t see it and you could think he was normal. But I recognized that feeling as a dead end and refused to act on it.

griffin2.jpg

AMY: Tell me a little about what it was like introducing your son to people, or taking him out places for the first time.

QUINN: You know, sometimes this is still a little hard? Griffin attracts a lot of attention in public places–all babies do. When someone’s waving at him or talking with me about him there’s a little part of me that’s always wondering if they’re thinking about his hand. My husband and I actually LOVE it when someone mentions the hand. It’s such a relief to not have to wonder.

Amazingly, we have not gotten a single bad comment. No one has asked if I drank or took drugs. Weirdly, a lot of people think it’s adorable. Children are the best–they’re curious about it, but then that’s it. They’re more interested in playing with him, just like they would with any other baby. I haven’t yet decided whether this is because people are just a lot better than I expected, or if I owe one hell of a thank you note to Disney for producing Finding Nemo.

STEVE:I feel like everyone we know took it in stride. We wanted to talk about the hand and they were all Yeah, whatever, look how adorable! You made an actual tiny person!

We make a lot of jokes, like, “Well, we figure he’ll only be half as grabby as other babies.” and “He may be missing that part, but we didn’t circumcise him, so he’s even with most boys.”

As far as strangers, it’s a breath of fresh air when people actually mention it and we can talk about it. If they don’t, then we feel like they’re just looking and wondering.

Surprisingly, we’ve found that a lot of people don’t even notice it, or it takes them a long time to do so. A grandmother at a barbecue that I took him to took half an hour to notice it, and she was holding him for the last 10 minutes of that! Humans really do fixate on each other’s faces, it seems.

AMY: What things helped you work through the emotions and get to the “acceptance” stage? What set you back? How are you, like, NOW?

QUINN: I won’t lie–I’m still sad sometimes. I wouldn’t trade Griffin for the most perfectly-formed child in the history of the world. But I’d move heaven and earth if it would get him a second hand.

Ultimately, getting answers helped. It helped to hear from doctor after doctor that this was an isolated thing. It helped to hear that I didn’t cause it. It also helped that Griffin started hitting milestones, developing appropriately and growing like some sort of weed child. I hate saying this because the thing I wanted most in the hospital was some damn answers, but that simply wasn’t possible right after he was born.
I wish that more pregnancy and parenting books had information about this sort of thing. Three percent of all babies born in the US have some sort of birth defect, and 70% of them have no known cause. (The CDC has a great webpage on this.) We’ve been amazed at how many people have talked to us about family members or friends who have birth defects–in fact, we learned that the wife of my husband’s oldest friend was inexplicably born without eyes. Fortunately most of these are minor and easily fixed–webbed fingers and toes, holes in the abdominal wall–but they still occur, and there’s simply no known reason. And yet, none of the books I read mentioned that. They were all Fetal Alcohol Syndrome! Unpasteurized cheese! It’s ALL YOUR FAULT!

It also helped to get some perspective. Shortly after Griffin was born, we found out that one of the twin daughters of a childhood friend of my husband’s, Sweet Baby Zane (sweetbabyzane.com) was diagnosed with Type 1 Spinal Muscular Atrophy (SMA). The disease is always fatal within a year or two, and she was just a month older than Griffin. She passed away a little over a month ago. This has had a huge impact on me. Griffin has one hand, and there is nothing I can do about that–no treatments or surgeries. That’s a big deal. But at the same time, it’s really, really not.

STEVE: Finding Nemo. Jim Abbott. And Sweet Baby Zane. I know Quinn is talking about her, so I’ll just add that I’d like to point people to http://sweetbabyzane.com/ to learn more about SMA and how to help find a cure.

griffin3.jpg

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About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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26 Responses to “Grieving “Perfection””

  1. Cheryl Aug 04 at 9:43 am Reply Reply

    OMG, he’s an adorable baby!!!

  2. chiquita Aug 04 at 9:49 am Reply Reply

    thanks Amy, for sharing this. It’s a reminder of what is really important.

  3. Jessicawp Aug 04 at 11:05 am Reply Reply

    Thank you so much for addressing this. We found out at the 20 week u/s that Finn had a cleft lip and would probably have a cleft palate as well (he does). It was a huge shock to hear the OB say everything looked great, BUT…we defintely grieved for our lost “perfect” baby. And then felt guilty about feeling that way. We had time to get used to the cleft and had many u/s throughout my pregnancy due to other possible complications. We saw the cleft a lot, it was part of him. And when he was born he was the most beautiful baby I have ever seen.

  4. Suzy Aug 04 at 2:35 pm Reply Reply

    Incredible posting. Thanks so much to Quinn and Steve for sharing their inspiring story with us.
    Griffin is a beautiful little baby!!

  5. Bitts Aug 04 at 2:50 pm Reply Reply

    We were told at 13 wks. that our baby would have Down Syndrome. It took us the next 6 months of pregnancy to grieve our perfect baby and prepare for the one we were getting. By the time his due date rolled around, I had learned that the old adage is true: you get what you can handle. When the Genetic Counselor calles to schedule a Big Meeting (and says bring your husband and someone to drive the two of you home), you think you CANNOT handle it. But you can.
    Though maybe Quinn thought she could never be a special needs mom, she’s learning that she is the PERFECT mom for a baby with THIS special need. God doesn’t make mistakes. You are the perfect family for your baby. No mistakes were made. Welcome to Holland!
    Imagine our surprise to learn we ended up in Italy, anyway?!?

  6. Heidi Aug 04 at 3:00 pm Reply Reply

    Oh my, I am crying over here. This IS the best entry, and so sweet.
    I agree, most people feel dismayed that they’re baby isn’t “whole” or “perfect” and then feel guilty for feeling that way. Like someone else has the right to tell them how to feel? I don’t think so.
    Oh, I loved this post.

  7. Jessie Aug 04 at 3:41 pm Reply Reply

    Thanks so much for this post. Our daughter was born with hip dysplasia, and even though it’s not a visible defect, she did have to wear a brace for the first 16 months of her life. The brace made it impossible for her to wear little tiny sleepers or the multitudes of tiny cute socks I bought for her. I only got to see her adorable toes at bath time, and I was scared about how I held her and if it would prevent her hip from growing properly. Yes, it was something that was not really very serious, but I did grieve for my perfect baby, which is hard because then you feel guilty about feeling bad about your baby. But after a while, you get used to it, people were awesome just like in the example above, and you realize that no one is “perfect”, but your baby is still perfect for you.

  8. Jenn Aug 04 at 4:57 pm Reply Reply

    Thanks for posting this. As the daughter of a man born prematurely with multiple birth defects (missing forearm muscles in his right arm, severe clubbed feet that led to amputation of both feet) over 50 years ago, I’ve heard plenty of stories about the worry and the trials a child can go through. Strong, supportive parents are so important. My grandma is a remarkable woman and my father was raised to believe he can do pretty much anything, it just may take some modifications.
    It is so much better not to hide, but to be open about what is going on. And humor is vital – my dad is very funny and can put anyone at ease, which is good since he insists on wearing shorts that show off his ‘bionic legs.’ It helps people realize the differences are not so great after all.

  9. Kim Aug 04 at 9:27 pm Reply Reply

    My brother was born with hydrocephalus. I always try to think about how my parents felt when he was born; expecting a perfect baby boy and getting a baby that needed multiple brain surgeries. The doctors told my mother that my brother was going to be a vegetable and to put him in a home. I’m glad she didn’t. He is now 25 year old and although he is mentally slow, I would never have traded him. My parents divorced when we were little. About a year ago, my mother (who is not religious) told me that she believed God gave her my brother so she wouldn’t be alone when she was older. What a wonderful way to think! No matter what you believe, there is a plan of some sort and things eventually work out in the end. I am putting a link of a story about having a special needs child.
    http://nurturee.com/special/needs/online.asp?story=4
    Thanks for addressing this, Amy and “hiding” this topic as some do.

  10. Olivia Aug 05 at 9:39 am Reply Reply

    Jessie, my daughter had hip displaysia too, but only had to wear the brace for 6 weeks. At birth, her knee also bent forward, the wrong direction, due to her foot being firmly planted against her head for a considerable amount of time in the womb. For that, she only needed a splint hold her knee bent the correct way for two weeks.
    Even though her defects were minor, I did cry when we brought her home from the orthopedist. It was so much grief for a lost “perfect” baby, it was that seeing my wee babe in that brace and with a heavy, plaster splint looked sad to me.
    I was born with a defect, also. My foot was bent up against my shin, a vertical talus. It was mostly corrected (I have arthritis and limited motion in my ankle/foot) by stretching with a cast during my first 7 months, then surgery and more casting until sometime after age one. I can only imagine how scary it must have been for my mother to have her baby need surgery. My heart goes out to all the parents of special needs children however major or minor their conditions are.

  11. Calli Aug 05 at 12:11 pm Reply Reply

    Hi,
    Your baby is soo cute! And to give some info on life further down the line, I’m in college with a guy who has the same deal – he’s soo cute too :)…and only has one hand, also since birth. He’s an awesome guy and a leader on campus and I’m a little upset that I haven’t got to date him. I worry about what he thinks of me, not what I think of his hand!

  12. EMS Aug 05 at 12:20 pm Reply Reply

    My son was born with a really rare chromosome disorder that wasn’t diagnosed until 2 weeks after he was born. Among other things, he’ll prob. be mentally retarded (he’s almost 2, but they don’t “officially” diagnose this until later.)
    What bothers me most is when people, usually close relatives, kind of act like our grieving process is over – it’s not, and it prob. will never be. I think I have a bit of post-traumatic stress in which I’m constantly replaying what happened during our 5 1/2 week NICU stay over and over in my mind. Almost 2 years in I’d say that I’m STILL getting used to the idea of being a “special needs” parent…In a way, I find that people who are just hearing about what’s wrong with him to be the most sympathetic.
    Another thing that really bugs me are the “God only gives you what he thinks you can handle”-type comments. For one, we’re agnostic. For another, it makes us feel like this happened on purpose, when it was really just a really, really rare genetic fluke.
    All that said, I’m glad this is being discussed! :)

    • demelzabunny Apr 15 at 12:48 am Reply Reply

      I have an 11 1/2 year old daughter who is what we used to call retarded; she is non-verbal, can’t toilet herself and basically functions at a 1 – 2 year old level.  A little over a year ago, my husband and I sent her to live at a residential school where she can hopefully fulfill her potential (whatever that may be; she is undiagnosed) and at least learn Skills of Daily Living.  I do not believe in God and that he doesn’t give people what they can’t handle; it this is true, he made a humongous mistake in my case!  Even though my husband and I are relieved of the daily stress of taking care of her, I am totally unable to accept the fact that my daughter will never take ballet lessons, go on dates, graduate from college, watch my fav old movies with me, or learn knitting from me.  I’ve never even heard her say, “Mommy,” and probably never will.  I am distraught and an emotional mess (years of therapy and meds really haven’t made a difference).  This is taking a terrible toll on my marriage, because my husband is able to deal with the situation better than I and just seems to think I want people feel sorry for me!  I know he’s just tired of my being depressed and unable to cope properly, but what else can I do?  Any suggestions?  Thanks you you all for reading my story.  I do NOT want you to feel sorry for me; just looking for answers and support.

  13. Kate Aug 05 at 3:41 pm Reply Reply

    Thank you. This post made me feel a little more normal. Our little boy, who I’m 7 months pregnant with now has a CCAM – which is a benign growth on his lung. I go for weekly u/s to make sure it’s stable (so far, so good). After he’s born he’ll require surgery within the 1st year to remove it. The diagnosis was hard to hear, esp. since it’s displacing his heart and the risk of complications is high. I too had to grieve for the child I thought I was going to have. And I’ve spent hours and days wondering if I did something wrong to cause it (I now know I did not…but it’s still in the back of my mind at times). Ironically though, I think knowing my little guy is starting out with challenges only makes me love him more.

  14. Joanna Aug 05 at 6:49 pm Reply Reply

    Thank you so much for this articulate and honest discussion–this topic really isn’t addressed enough, that’s for sure.

  15. q Aug 05 at 9:42 pm Reply Reply

    my husband has two missing fingers on his left hand. he’s told me what it was like to grow up like this many times. the people who believed in him and didn’t protect him from failure are the ones he really appreciates now. his grandparents got him a piano and a computer. now he’s got a room full of vintage keyboards and is the faster typer I know. nothing is going to stop your beautiful son from being amazing. i typically find that people who are faced with a challenge early on in life tend to be the most successful.
    great article. something we should all feel more comfortable talking about.

  16. Becky Aug 06 at 10:49 am Reply Reply

    My 1.5 year old son has duane’s syndrome, which is basically crossd eyes. I’ll be honest and admit I’m still not ok with it. Why my son? I realize it could have been so much worse but it still is a big deal for me. My family is the type to joke about it and says its not a big issue. I hate that. I need someone to tell me “you know what, yeah that sucks. Man, he got a bum deal.” But no one will because it is just cross eyes. I don’t think I can move through my grief until someone validates my feelings. Sometimes parents just need some validation before we can move on and deal with the facts. My son has crossed eyes. He will have to deal with more teasing than most kids. My son will be loved regardless of this.

  17. Andrea Aug 06 at 11:24 am Reply Reply

    Thank you so much for delving into this and sharing your story. I wish we had more resources when our daughter was born. In our case, my daughter was ultimately diagnosed with distal arthrogryposis, but it presented like trisomy 18. The doctors and nurses basically wrote my daughter off, to the point of not even helping me with nursing difficulties when I asked. My daughter is smart and beautiful and spunky, and her hands may not look like anyone else’s but that does not stop her, so we won’t let it stop us either. Incidentally, her hand doctor, Joseph Upton is one of the best in the world, and he has done some amazing things for children with hand disorders. He may be worth a consult, if only for his extremely caring and upbeat attitude.

  18. Michelle Pixie Aug 06 at 2:58 pm Reply Reply

    This is a great post very touching, heartfelt, and raw. I fought back the tears. Thank you for sharing your story.
    He has got to be on of the most scrumptious little guys I have ever laid eyes on!

  19. Quinn Aug 09 at 12:34 am Reply Reply

    Thank you all so, so much. It took me so long to respond to this because it’s been pretty emotional reading these comments. There are so many of us out there. I’m so glad we’re talking about this.
    Also, thank you all so much for the compliments on Griffin! I think he’s fabulous, but then, I’m biased. ;)
    Becky–you are 100% percent right. You need to admit that your son’s situation sucks in order to fully accept it. It’s part of what Steve and I were trying to say, that you can’t just pretend a birth defect doesn’t matter. You have to let yourself grieve in order to be the best parent to your child.
    So, here: Becky, you’re right. It sucks ass what happened to your son. Life’s going to be tougher for him in a multitude of ways, some we can predict and some that we can’t. It’s not fair that he was handicapped from the start. It’s not fair that this happened to YOUR son, when you see so many other people having healthy babies. You both got a raw deal, and he’s the one that has to pay the price.
    But you are an incredible parent. You love him fiercely–you can tell by the emotion in your comment. That fierce love and devotion will ultimately be a more precious gift than proper eyes ever could be. He is going to grow up to be strong, happy, and successful.
    I hope that helped. Good luck.

  20. Kari Weber Aug 09 at 11:29 pm Reply Reply

    My son Zachary (my first child) was born with a hole in his heart. I remember that my husband and I were all packed up and ready to leave the hospital when the pediatrician came in for “one last check”. It seemed to be taking a while, and suddenly she just said, “I hear a murmur, I have to take Zachary for a chest X-ray” and then JUST LEFT… QUICKLY! We were left sitting on the bed, in total shock. What was a murmur? Why did they need to take an x-ray? Where the He** did they just take our baby?!?! What if it is serious? How could they not notice before? For what seemed like hours, but was probably more like 20 minutes, we were left ALONE in our room, surrounded by packed bags, an awaiting car seat, and a multitude of other crap, thinking that this perfect baby was going to be taken from us. The hole in his heart ended up being something that didn’t require surgery, but I had to take my 3 day old infant to a pediatric cardiologist for a sonogram, and I needed help just to do it. I was so afraid of what they were going to find. Even though Zachary eventually outgrew the defect, and had no major complications due to it, when I got pregnant with my second son Jackson, the first few months, until that ultrasound where I could see the beating heart, were horrible. I was so worried that something would be wrong with Jackson, and that this time we wouldn’t be so lucky. I learned that my husband has a heart murmur still, my mom had one, and my maternal grandfather, and uncle died from aortic anurysms (sp.?) I was convinced this was a genetic disorder, and OMG what if Jackson has it, and I can’t do anything….. Ahhhhh! I even had a huge U/S at 35 weeks with a specialist who was looking specifically at the heart, and trying to determine if things were fine. It wasn’t really until Jackson was born, happy, healthy, and 9 pounds 11 oz. with an AMAZING heartbeat and no problems that I got over my fear. What I learned was: things happen, we often have no control over. How we deal with them, our attitude, etc. is probably what matters most. Griffin will be AWESOME because you are willing him to be. With all your love, all your support, and all your emotions. Even if my son had been born with a more serious problem, he would have been perfect because he was MINE.

  21. Anonymous Aug 20 at 12:07 am Reply Reply

    I had mainly tried to find a site that could give me a medical reason for my sons defects I blamed myself thinking it was somthing i did or did not do i still blame myself even though drs all say it just happens my son was born with a heart murmur, hair on his behind so they thought he had spina bifida but thank god it was just a hairy spot. he was born missing toes and im scared he might not be able to walk the drs say he should be able to and i found out today he has a condition called stridor and laryngomalacia .im scared he will get picked at when he starts school and if there are any other problems for him in his future his eyes dont close all the way and the drs he has seen see many flaws with his appearence but they dont know what they mean at first i cried alot and told no one but now this past 3 weeks i have told my family i had to accept it and i cant see him any other way your i just want to thank you all for shareing

  22. shellbelle78 Aug 20 at 9:51 am Reply Reply

    I saw this pop up in my feed reader and was so glad – our second son, Jack, who is six months old now, was born with the same deficiency. And everything you said in your answers was exactly what we went through.
    It still makes me sad looking back that my first thought in seeing him was, “What’s wrong with his hand?” Not, look, there’s my beautiful baby (which is what I think now every time I see him). We all have obstacles to overcome, Jack’s is just obvious and physical, but ultimately I believe it will make him a better, stronger and more compassionate person. As his mother, it’s my job to make sure he doesn’t get taken advantage of but also to make sure he doesn’t try to take advantage of his situation – that he doesn’t expect to get an easy ride because he doesn’t have a fully formed left hand. We have heard from so many people who have children or know people with a similar situation and all of them say how amazing it is what little it does to hold them back – stories of piano players and texting teenagers and baseball players. I think now that Jack will only be limited by any limits we place on him or that he places on himself. (And it’s true, what you said, kids are great with Jack – they only care about whether or not his hand was hurt but when they understand that nothing happened to it, he was just born that way, they continue making faces and playing with him; adults on the other hand aren’t as forward and I wish they would be and just ask.)
    My heart still breaks a little for him, knowing that the road won’t always be easy and that having a physical deformity still calls unwanted attention. And it’s hard to see other babies around his age who are “perfect” but I just have to keep reminding myself what a true gift he is and how blessed I am by him each day and how it DOESN’T MATTER. Truly. He is perfect as he is.
    Thank you for sharing your story… the more we talk about it, the more people will broaden their horizons and the less taboo these issues will be. Griffin is stinkin’ adorable! (Jack does the same thing, shoving his whole little hand in his mouth which caused one unknowing cashier to comment, “He for real has his whole hand in his mouth.”)

  23. Quinn Aug 20 at 9:23 pm Reply Reply

    Most recent anonymous: You need to see a clinical geneticist. I don’t mean that in a scary way, I just mean that a clinical geneticist is the doctor you see for this–just like an orthopedist is who you see if you have a broken hand.
    If it helps, this one pediatrician at the hospital examined him and noted that he has a single palmar crease on his right hand. She also said that his thumb was extra long, and told us that these things together meant that this was probably genetic. DUN DUN DUN. I was almost hysterical by the time she left, as the single palmar crease at least can be related to chromosomal disorders. Basically she was super dour and unhelpful and I hate her.
    But! Guess what? She was wrong. Flat out wrong. I specifically mentioned both of these things to the geneticists, even though they had the hospital discharge papers where she discusses these things about his appearance. They said she was 1) wrong about the thumb, it was of perfectly normal length, and 2) that the single palmar crease meant nothing.
    And here’s the thing: geneticists specialize in this sort of thing. They took all sorts of measurements of Griffin, distances between various parts of his eyes and all sorts of crazy things. They looked him over so closely that they found a teeny tiny little mark that *I* had never noticed. They’re in the business of relating these tiny little seemingly inconsequential things together to mean something important.
    The way the geneticists described it, there are many, many people in the world who have idiosyncrasies. Some are more noticeable than others–a missing hand, for example–but the vast majority of them are just things that make people different from each other. They mean nothing. Sometimes, however, you find more than one idiosyncrasy in the same person. When that happens it is a little more likely that those things are related to each other–but that still doesn’t mean anything dire or horrible. It just means that those odd things are more likely related. Maybe there’s a name for it, maybe not. But the chances are incredibly good that it’s not your fault.
    Anyway. Go see a clinical geneticist for real answers. Remember that your baby will be inspected harder for appearance flaws than other babies. As for the missing toes, your baby will learn to walk with those toes missing–he’ll be absolutely fine. You can get occupational therapy if necessary, but chances are good it won’t be. Actually, doctors will remove toes to create rudimentary fingers in children who have none, so clearly you can do just fine without toes!
    Good luck!

  24. Anonymous Sep 08 at 9:53 am Reply Reply

    Thank you so much for this. I am currently 35 weeks pregnant with a son who will be born with a hand condition. We learned about it at our 20 week ultrasound and definitely went through a grieving process at the fact that our son wouldn’t be born “perfect.” We still don’t even know what kind of hand condition he’ll have – despite all the ultrasounds we’ve been to, the right hand is often hidden or unclear – but I believe his will be very similar to Griffin’s. It’s made such a difference to us to see all the other parents out there who have gone through this and to see the strength and love outshine everything.

  25. Quinn Oct 09 at 12:47 am Reply Reply

    Anonymous- if you want to talk, or want specific advice about treatment, please email me at q&cassidy&@&gmail&.&com without the ampersands.
    Just to give you a glimpse into the future, yesterday Griffin and his older brother (my stepson) and I were at the grocery store. Griffin kept holding his hand (either one) out to his older brother, who obligingly made CHOMP noises and motions. Griffin immediately snatched his hand back and burst into ringing laughter. This continued for about five minutes straight. I don’t think a single person who saw us noticed Griffin’s left hand, and it didn’t bother Griffin or his brother in the slightest.

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