Local Family Has Daughter Born Without a Face

First Coast News ^ | Created: 11/26/2004 12:03:06 PM, Updated: 12/7/2004 1:59:40 PM | Jeannie Blaylock, First Coast News

[AM2000]

JACKSONVILLE, FL -- When most parents have a baby, they spend months dreaming about what their bundle of joy will look like. Will she look like mom? Will he have dad's eyes? But for one local Navy family, the birth of their daughter didn't give them the answers to those questions. Their daughter was born without a face.

When Tammy was pregnant, she knew something was wrong. At worst, they thought maybe their baby had a cleft lip.

So Tammy, and her husband Tom, went to the hospital happy, until the birth.

"The nurse is like, 'We got her stable, we need to rush her upstairs,'" explains Tom, as he recalls every minute of that day. "And the nurse asked, 'Do you want your wife to see her now?'"

Tom says he thought to himself, "Before she gets the shock I did, let me take a picture so she's prepared."

Tammy hadn't seen her new baby yet, because she almost bled to death during delivery. Tammy would be okay, meanwhile, dad went to take pictures of his new daughter.

But no matter what, these new parents had a wish. "That if there was something wrong, she wouldn't be alone. We wanted to make sure she felt loved," said Tom, as he began to cry. "She squeezed my hand."

Little Juliana is missing 30 - 40 percent of the bones in her face.

"She has no upper jaw, no cheek bones, no eye sockets, and she's missing the corner of her ear," explains Tom.

Her birth defect is called Treacher Collins Syndrome. Doctors say it's the worst case they've ever seen.

So, how do you get people to see past all the defects, and find her heart? For mom, it just hurts.

"I just wish people would ask questions. Don't just stare," says Tammy. "I guess the most hurtful thing came not long ago, a little girl said she was disgusting."

Juliana has to eat through her stomach, and she has a trach to breathe. Already, less than two years into her life, she's had 14 surgeries. Doctors say she could need at least 30 more.

Every time she goes to the hospital, doctors make a mold of her head, and then reconstruct her skull to figure out the next step.

It's a life-long process that's draining for Tammy and Tom. Even still, they're thankful and full of love for their sweet child.

"God never gives you more than you can handle. I figure she has a lot to show everyone... to show the world," says Tom.

If you are interested in helping the Wetmore family, a savings account is set up for donations at the Vystar Credit Union in Middleburg.

Donations can be made at ANY Vystar Credit Union to Juliana Wetmore at member number 2102465.

Direct donations can be sent to:

Juliana Wetmore

3018 Hickory Glenn Dr.

Orange Park, FL 32065

[FBD]

-and I suspect you have never kept your mouth closed long enough to listen, if someone were to tell you. All you want to do is argue with them.
Argue with this gal, she has the same condition, and she's studying pediatrics:

http://www.treachercollins.org/main.html

As I said in my *last* post to you:
"Take care"

[verity]

I hope this last post was really your last post to me. ;~)

[Hildy]

Does he breathe and eat on his own?

[FBD]

"Men occasionally stumble over the truth, but most of them pick themselves up and hurry off as if nothing has happened." -- Winston Churchill

[Selkie]

Here's the web site of one young woman with the condition who is an Internal Medicine and Pediatrics resident at Baylor College of Medicine in Houston, Texas.
http://www.treachercollins.org/main.html>>>
Thanks for posting that link.
That young woman's words have moved me to tears.
Very inspiring.

[Hildy]

No offense, but that girl on the page's deformity is NOTHING compared to what this little girl has. It's much different. much, much different. I never, ever said that people with deformaties are less than. I'm talking about this one particular extreme case. You know, the ONE WE'RE ALL TALKING ABOUT HERE.

[FBD]

Not as a child he didn't. He was tube fed, and had many surgeries.

But did you read this web page yet?

http://www.treachercollins.org/main.html

[FBD]

"..but that girl on the page's deformity is NOTHING compared to what this little girl has. It's much different. much, much different..."

-No, it's not, it's exactly the same condition! That's her after many, many surgeries, she still breathes through a trach tube, just like the baby in this article. And she has no external ears, just like the girl in this article.

I>" I never, ever said that people with deformaties are less than."<

-Yes, you have Hildy:
>" So they must live in pain and sorrow so WE can be inspired? How utterly selfish."

-and I read the post where you said you would have done nothing to try and help this baby.

- Look FRiend... try and befriend someone with some deformity...many of them are lonely because they get shunned.
They will appreciate your friendship, (if it's sincere)
and you just might learn something from them:

"What lies behind us and what lies before us are tiny matters compared to what lies within us."
-Ralph Waldo Emerson

Regards

[Happy2BMe]

FBS's post #281 - WoW - What inspiration to ALL of us!

Amy's Home

[verity]

Is this your final, final, final post as you previously promised or or you loquacious by nature.?

[FBD]

Ha! ;^D
Maybe so.

Now, take care, really, ok?
Regards

[Tired of Taxes]

I know a family with a daughter who has a birth defect that seems similar - she undergoes surgery at least once a year, and she must be 10 or 11 years old now. The good news is that modern science is really performing wonders! And she has come a long way. She is a very personable, well-liked girl who seems very strong emotionally. So there is still hope for the little girl in the story. I hope we get to see a follow-up story in a couple years with good news!

[Thumper1960]

I'll not claim to know what is in the hearts and minds of others. Just as each life is unique, so is each life to be judged on its merits. So must the choices be made by the birth parents as to the disposition of their offspring. The question of whether or not the infant "knows" it is different is open for debate. While a sentient being, one cannot fully know its level of self-awareness, or even its capacity to understand.

As for your personal experiences, the zealot is always certain of his/her own righteousness.

[fiftycal]

So many folks ask..."How can a loving God allow this to happen?" I freely admit I don't have an answer. But I do know this much. A loving God cared enough for us that he sent his only begotten Son to die on a cruel cross so that we might have eternal life.

I can speculate on an answer though. Perhaps this little girl's struggle and that of her family are meant to accomplish something wonderful in this world. God might be using her and her family to teach us all how to love deeper. Remember that our Heavenly Father loves us all, regardless of how we look. Seeing the picture of her father looking at her with love and adoration, made me take a long hard look at my life. It has helped me separate the wheat from the chaff and made me realize just how insignificant many of my "problems" are. I have a little daughter whom I love more than life itself. And yet - I know I don't love her as much as this girl's father loves her.

My personal belief is that this girl is going to be alright. She has a family that loves her - good medical care - and the prayers of many people who want her to be healed.

I also appeal to many of my conservative-libertarian brethren. Lets not only open our hearts and prayers - lets open our wallets and make a donation.

[AUtL]

What is the chief end of man?
Man's chief end is to glorify God and to enjoy Him forever.

That is question #1 of the 107 Catechism questions, a series of questions and answers that sums up what God has revealed to us through His living testimony, the Bible. It is also the answer to the age-old question, "What is the meaning of life?" It is impossible to know how to glorify and enjoy Him if one has no knowledge of the Scriptures.

I have thoroughly enjoyed reading through this dialogue, and feel there's much I'd like to offer. First of all, with all due respect, I'd like to remind us all that we are talking about a human being. A child. Her name is Juliana - a most beautiful name, I'm sure you all agree. I have found myself touched in much the same way as many of you, and have found myself actually grieving over her. I have 6 children, and my youngest is almost exactly Juliana's age. I suppose, therefore, it really hit home, and I find myself watching all the things she does in all her "normal" ways, and realizing how "Juliana can't do that." But do I curse God for what some can't help but see as hideous? No; Juliana is beautiful to me. I don't understand why everyone insists on calling her the girl without a face either - for simplicity's sake, in news titles, I suppose (although I did see one that stated that she was born without facial bones, which is the correct statement) - but she of course has a face, and yes, it's very different from all the rest of us normal people (and the irony is, that range is so very broad). Many things were said in an attempt to make sense out of Juliana's situation. Let these things be added:

"Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD?" Exodus 4:11 Yes, God is Creator and sovereign, in control of all things.

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139:13-16 In this estate of sin & misery, Juliana's condition is a result of a genetic anomaly, but still not a sick joke, mean-spirited, unknown by God, or any other errant thing we think about God with our struggling, feeble minds. No;

"For I know the plans I have for [Juliana]," declares the LORD,"plans to prosper [her] and not to harm [her], plans to give [her] hope and a future." Jeremiah 29:11(brackets mine, for effect) Who but God could make such a promise as that with one such as Juliana?
Dear friends, know that

He has made everything beautiful in its time. Ecclesiastes 3:11

There have been some passionate comments thrown around in this conversation. I have to admit I was furious with ones spitting on Juliana's worth. I wonder if those of you making such comments would feel the same way about a maimed and disfigured puppy. I had a Grandpa who had arterial sclerosis, and had to have one leg amputated and then the other. I had a one-armed Walmart employee help me locate something recently. What about that poor precious baby whose mother cut its arms off - do you truly believe everything should be done in such a case to put the child out of its perceived future misery? What about severe burn victims, people born with excessive facial birth marks...do I understand that there are those who believe we should put such "out of their misery" because they will lead a life of pain and indignity? How about war victims, left maimed, disfigured, and with medical problems? The obese? I think you open up a topic with which you need to think a little before you make such haughty, repugnant, narcissistic comments. And perhaps the latter adjective is really where this is all at - it's up to us to give these people dignity. Maybe these comments have far more to do with your discomfort in dealing with such sorts than any supposed virtue ("compassion") you're attempting to uphold.

Christ made it clear that in this world we will have troubles. This is a truth that none of us escapes. We all experience pain of various sorts, offenses and indignities of various sorts. Two things: 1) I find it interesting how many "poor girl/ poor parents" comments there are. Jesus is near to the brokenhearted. There is no better place to be than near God! Who can know the blessings this family knows because Juliana is so "abnormal." 2)Don't you need Juliana? I need Juliana. Don't we get so caught up in the rat race, and in pursuing our own pleasures that we (who are Believers) forget to glorify God and (we all) neglect what Christ called "the least of these"? Someone had a problem with the parents letting Juliana's story be known, asserting that they "just want the attention." Can there be any doubt that these parents agonized over this decision? Obviously, Juliana has been on this earth almost 2 years, only recently to our knowledge. Do you not think they must believe that enduring those who surely care only to exploit her and all the harsh comments like yours will be worth the exposure that will surely ensure the best expertise in the world, financial help, and giving the community of human beings an opportunity to grow in true
compassion and character. Juliana is not disgusting. What's disgusting (and ironic) is people who themselves have the character of an ogre and see her as disgusting.

All right, this thing's so long nobody's probably even reading it all - but what a country where we can banter as long as we want! I thank God for Juliana. She has greatly impacted our family. She has given me opportunity to teach my children true humanity, that we would never want to make anyone feel badly because of how they are designed. She and her family remind me continually of what's important (lessons I have hard to learn yet). That different does not need to be considered weird, ugly, unlovable or even unapproachable. Juliana is precious. Have you ever seen such a loving child? What an incredible job her parents and sister are doing of loving and affirming her, that she would be so warm to everyone she meets. I suppose, unfortunately, with my ending comment, some of you will insist on some sort of sad, perverse conclusion, but I thank the LORD for the Wetmores. I needed that family.

[Hildy]

I understand everything you're saying. And I know this is aimed primarily at me. But I just want to clarify one very large misconception in your thesis. I (we) do not think she is "disgusting." What a horrible thing to say. My compassion is for the child, that's all. My stand is that there are things worse than death. You can disagree with that, but please don't misinterpret what I was trying to convey.

[AUtL]

Hello Hildy. I appreciate your response. First of all, please don't take any more offense than is necessary. I am wondering, like others have been, what story/parts of the story you've caught. Juliana's mom told of a little girl who called her disgusting; so that comment was more specifically in response to that, and any of those who, openly or secretly, agree.

A question I'm dying to know...are you a Believer? With all due respect, I find it hard to believe that you can know the one, true, living God and hold the stance you do. Only those not in their right minds would not agree that, to give birth is to love that which you are given. I believe that, if you actually found yourself in their position, you would find yourself helplessly in love with this creature, and protective over it at all costs. I was not familiar with the Baby Knauer story; checked it out. Sickening. Groningen. (sp?!) Surely, Hildy, you do not include yourself in this camp.

A word for you on suffering:
...we rejoice in our sufferings, knowing that suffering produces endurance,and endurance produces character,and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.
Romans 5:3-5
Therefore let those who suffer according to God's will entrust their souls to a faithful Creator while doing good.
1 Peter 4:19
For I consider that the sufferings of the present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18

It was said that adversity produces character. Character or bitterness. For the believer, it should definitely be character. Trials and sufferings are used by God for our good. They are to refine us and draw us nearer to Him.

[Hildy]

well, obviously I am not a believer as you are. I do not believe in life at any cost if there's intense suffering involved. You probably haven't read my posts before, but I am not shy about what I think. After watching two members of my family die in agony and performing the duties of caretaking a bedridden mother, (that I do with joy), I just don't believe the same way you do.

I've been readnig "THE PURPOSE DRIVEN LIFE" (I'm Jewish). And I am enjoying it immensely. It seems that our Purpose here is to serve God and prepare for the afterlife. He says that our bodies are just vessels. So if that's true, why must we force people to suffer in vessels when we know that without those vessels their spirits will soar? Nobody has been able to explain that to me. I'm hoping you can. Thank you.

[AUtL]

The soul that loves God will suffer anything for Him.

[Hildy]

I don't understand that at all. And, if I did, how could a small child make that decision?