Forward March!

So, today is the annual March for Life on in Washington, D.C.  It’s live streaming on EWTN, right here.  It gets rolling around noon, I think, and is worth a peek or staying tuned in. My Tom and Hannah and Marta and Hannah’s best buddy Anna are all there, cold and tired but standing up for what they believe.  I’m proud of them for it!

Many of you might not be comfortable with the advocacy for this issue. I get that.  And I spent years, years ago, in the camp of “pro-choice, not my place to dictate to others” etc etc etc.  And, it’s not  my place to dictate to anyone, to be sure.   But it is my place and my blog to say what I believe and why I  believe this March for Life means something.

The March for Life is important because in our modern culture, life has been trivialized and denigrated and devalued.  It has.  Look around  you, look at the news.  Our popular culture and the focus on celebrities marginalize anyone who isn’t “hot” or the new “it” tabloid darling.  We feed on sound bites and scandal; effectively turning even those with true tangible need into mere commodities.  The images provide the hook and maybe, if they’re lucky, a soundbite.  Sound cynical? Well, maybe.  But I see it.  And that mindset provides the slippery slope to dismiss, or worse, to rank people by a skewed perceived ability to meet or attain the feeding frenzy of our warp speed. attention deficit, pop media values. And it’s wrong.  It is, in fact, I’ll say it, evil.  Evil devalues us, all of us.

This March for Life also is a march for ALL life, the unborn, yes, but also the disabled, the aged, all who are devalued because somehow, they are not good enough.  This March fights stands up against the tide of ingrained racism and stereotypes and valuation that has become entrenched in our culture.  This march is a march to stand up for the value of ALL human life, for it’s dignity, period.  I am Catholic.  I am prolife.  I am a mom.  I am pro-life.  I am a woman. I am pro-life.

But here, once again, is why I’m prolife.  These are what turned me for good and for ever.  Take a look, again:

>Blog Interrupted…….

>

My blog is usually a place for my own scrapbook of the family, for my free therapy pondering of mom issues, and talking about my fav subjects: my kids, catholic life, adoption issues and so on.
But today I would like to interrupt our regularly scheduled programming for a minor rant against the infernal health insurance industry… or as I prefer to refer to them: those soulless miscreants.
  
Recently I got in the mail one of those blasted letters stating that the insurance company will no longer pay for my daughter’s seizure medicine, the name brand version.  It said we must switch to the generic.
Hmmmm.
Now I’m not one to be all snooty about name brand anything.
I may love a name brand snooty fabulous purse, but I don’t buy them.  My sister gives me them for birthdays and I swoon with joy.
I may love certain names in oh, wine, or chocolate.  And I do buy them because they are so ridiculously much better…..
But I am all about getting t-shirts and whatnot at target or wherever, to save a buck and have almost exactly the same product.
I love a flea market and haggling for a deal; one my son’s favorite sports is haggling for generic goods with street vendors. 
I “get” the generic concept; we live it when it works.
Unless it comes to the concept of a medicine that can save a life.
Especially if that life is my daughter’s.

Perhaps you might think I’m being overly dramatic.
Perhaps I am.
But look at this face:

If this face was your precious girl….you might feel a little dramatic too.
You too might feel like strapping on your gear and going on the warpath for your girl.
Your sense of right and wrong may have just taken a slap, no, a right hook, in the face.
And you too might know that this needs to be pursued, or at the very least needs to be shouted out…..so that others will see when the insurance industry once again is caught out being hypocrites who only care about the bottom line, despite their ads with deep voiced comforting announcers, Norman Rockwell settings…oh so poignant .

This girl of this beautiful face had a seizure that could have killed her eight years ago.
It was a Status Epilepticus seizure.
Yeah, wikipedia that one, read it and shiver.
Hers lasted for HOURS.  Yes, that’s not a typo.  Hours.
She spent days in the PICU.
We were told she should never be put at risk to have another seizure like that again.  Status seizures are serious biz.
Seizures beget seizures and so we needed to make sure we found the right seizure med and stay on it.
Easier said than done, that.

After hacking through the medicine jungle for months and years…we finally did settle down on one seizure med. Others had allowed her to have countless absence seizures which we were unaware of (because you couldn’t tell they were happening, they weren’t physically dramatic like the first big one).  But then we got smart.
We got a better pediatric neurologist and he figured it out and switched meds to one that finally worked.  Seizures = controlled.  Our doc, who we love, has said for eight years, don’t use the generic as the quality control can vary between makers and the name brand is the only way to go. With seizures and this medical history, you must insure the coverage – medically speaking.
So that’s what we did, because it worked.
Breath a big sigh of relief.

Until now.  And now, I’m incensed.
Because now an insurance company, some drone behind a desk crunching numbers, is telling us, AND her doctor, that they flat WILL NOT allow him to prescribe the name brand seizure med for my daughter.
Wait, I should clarify: They WILL allow it, of course, they cannot stop that.  But they will NOT pay for any part of it.  Not until it fails.
Read that again:
Not until it fails.
Only after failure will they allow coverage for the name brand. 
A failure in this case can only mean a seizure, which – sure – might be no big deal.
Or it might be a bunch of small invisible to the eye seizures we can’t know about until we are baffled by why things are not doing well with her.

Or it could be, maybe, one of the rare Status seizures.  Which, yeah, the odds are low, granted.  But, it happened as her first ever seizure…and ya wanna know the odds of that? I haven’t looked it up, but I’m guessing it’s something along the lines of astronomical.

After getting this letter, I immediately was ticked.  But I laid it down, breathed, and decided to “do the right thing.” I followed the steps to disagree politely.  I called the doc’s office.  They said they will talk to the insurance company, they “were getting a lot of these letters.” (!)  Then my pediatric neurologist called me back.   No go.  What? So I called the insurance company myself, asked for a higher up, was told how to step through the dispute process, ask for a preauthorization (Despite that we’ve been using this med for EIGHT years) form.  They faxed a questionnaire to her neurologist.  He duly answered the questions and then it went to review.  And now, I have the letter, another one, in my hands saying that they WILL NOT pay for name brand.  She has no history of FAILING on the name brand….so she must try generic.

Let’s think about that: the name brand medicine WORKS. It prevents my daughter from having seizures.  So, by all means, we’d better switch to one that is untested and cheaper.  One that is impossible to ascertain quality control as multiple sources may manufacture it.  We must switch away from a medicine made to protect my daughter from having seizures, because it hasn’t failed yet.
Really?
Is this what medicine and health insurance/health care has come to in our country?
“If it works, lets switch it”…..?.

 If we were talking about medicine for something minor, not life threatening or impairing…say, bunions, I wouldn’t make a fuss.  Heck, I take generic meds to control my wonky blood sugar: metformin. I’ve taken the generic for so long I can hardly remember it’s name brand.  It’s not the generic plan in general I’m objecting to here, let me be clear.
It’s the risk to my girl.
It’s the principal of the thing.
Because this policy in this case is wrong. Period.

So my option now, thank you greedy giant corporate insurance company bigwigs, is to pay a small fortune every month for the proven safe meds for my daughter…. or take the calculated risk and let her try the generic.  Now, I realize, the odds are that the generic will work fine.  However, it simply galls me that we have to take that risk when the risk outcome is so great…all due to the number crunching of corporate, and despite the ridiculous (and bumped up over 20% increase this year) insurance premiums that we pay for our large family.  I had thought that is why the premiums were so high in the first place.   Can  you say there is no FACE in  healthcare, insurance level, anymore? I can.  It’s all about the stats babeee.

Now, to clarify, this is also not to say that we cannot in any way pay for these meds. It is to say that maybe,  just maybe, our insurance premiums that include prescription coverage should pay for it or for a good chunk of it…that’s what we were told and that’s what it’s been.  Our premiums are to cover the burdensome expenses of medicine, no? Should we just bolt it all and go to catastrophic coverage? Seems so maybe.  But….no.
Fortunately, we can pay for meds…but every dollar we do pay for meds that should be covered, and WERE covered under insurance before is one less dollar to go to oh, tuition, charitable donations, and so on.
It’s a poor use of our resources, considering it’s like a double payment (not poor use to pay for meds for my kid, don’t flame me that’s not what I’m saying).  
In fact, it’s a kind of gouging.
And that’s why I object; why and am simply angry, indeed, incensed.

This change in policy goes to line the pockets of the insurance execs, their stockholders, the bottom line of their plush corporate coffers.
Despicable them.
It doesn’t go to make the health care coverage better or more comprehensive or safer…in fact, it makes it less so.  

I think I’d like to go and have a nice civilized sit down with the head of this insurance company.
I’d like to ask them if they have a daughter.
I’d like to ask them if they’ve life-flighted that little daughter to a hospital.
I’d like to ask them if they’ve sat vigil bedside not sure if or how their girl would wake up, or in what shape.
Then I’d like to ask them if they’d like to take that risk.
I’d like to ask them how SURE they are that generics are “just exactly as good.”

Are they willing to bet their kid’s life on it?
I’ve gotta wonder if they would……

My sweet Sarahbird.  
Her fourth birthday, 
about one month before her Status seizure. 

>A WIN! Changing Lives, Families!

>For all you families waiting to travel and about to travel to go get your kids from Ethiopia, there is great news! The kids are coming home! If they are 10 or under, they can come home. No more waiting for cultures, now they can come home. Wahoo! Read below for the particulars.

As you all know, this is an issue close to our hearts. Our daughter Marta was stuck in Addis and not allowed to come home for eleven weeks, waiting on a TB culture. We fought, screamed, pushed, shoved, and prayed. And still we waited. Many others have done the same, causing much anguish and many problems. However, times are changing!

Many people have been working very hard to get the Technical Instructions changed and get our kids home. It has taken much work and pushing and researching and talking and meeting by many amazing dedicated people: lawyers, adoption professionals, doctors, families, all sorts of folks. And now, change has happened, for good! This is a big darn deal and while it would not have helped us in our situation, it will help the vast majority of most of the families who might otherwise be stuck. It is a huge step forward and worth a big cheer and shout of joy, even clapping for the CDC, who agreed to make the changes. So, without further ado:

2007 Technical Instructions for Tuberculosis Screening and Treatment Addendum: Instructions for Applicants 10 Years of Age or Younger

September 18, 2009

CDC has developed the following addendum instructions for travel clearances for 10 years of age or younger. The criteria described in these addendum Technical Instructions are based on physiologic
aspects of childhood tuberculosis disease and children’s ability to transmit tuberculosis disease.
These criteria do not apply to adults or children with tuberculosis disease associated with higher
levels of transmissibility.

Applicants 10 years of age or younger who require sputum cultures, regardless of HIV infection
status, may travel to the United States immediately after sputum smear analysis (while culture results
are pending) if none of the following conditions exist:
 Sputum smears are positive for acid-fast bacilli (AFB). If the applicant could not provide
sputum specimens and gastric aspirates were obtained, positive gastric aspirates for AFB do
not prevent travel while culture results are pending.
 Chest radiograph findings include―
o One or more cavities
o Extensive disease (e.g., particularly if involving both upper lobes)
 Respiratory symptoms include forceful and productive cough
 Known contact with a person with multidrug-resistant tuberculosis (MDR TB) who was
infectious at the time of contact

For applicants 10 years of age or younger who travel to the United States while results of cultures
are pending, panel physicians should―
 Give the applicant a Class B1 TB, Pulmonary classification
 Document that culture results are pending on the Chest X-Ray Worksheet (DS 3024 [until
September 30, 2009] or DS 3030 [beginning October 1, 2009]
 Forward culture results to DGMQ “Quality Assessment Program” via fax at 404-639-4441
so that DGMQ can forward the culture results to the receiving health departments

Panel physicians should provide the DS Forms based on the date of intended travel. If an applicant
10 years of age or younger will not travel until after culture results are to be reported (assuming they
are negative), the panel physicians should wait until that time before completing the DS Forms. If
the applicant 10 years of age or younger will travel while results of cultures are pending, the panel
physician should provide DS Forms while cultures are pending.

Panel physicians should not delay treatment on applicants 10 years of age or younger for whom
there is high suspicion of tuberculosis disease and who would benefit from therapy being started
prior to departure to the United States. Consistent with other applicants started on tuberculosis
treatment prior to travel, if therapy is started for an applicant 10 years of age or younger, the
applicant is Class A for tuberculosis. A Class A Waiver petition can be filed so that the waiver
petition could be reviewed and the applicant can travel to the United States before completion of therapy. CDC supports the filing of waiver requests for young children with tuberculosis disease so that the waiver application may be reviewed and adjudicated in a timely manner.

>Open letter to Michelle Obama

>This post is an open letter to Michelle Obama.
I know, I know…another letter. Really?
And to Michelle Obama?
A joke right? Um, no.

Yes, I wrote a letter, here, and Coffeedoc wrote a letter, here, with the details about this whole situation.
So, yeah, you could say we are on a letter binge…
But I prefer to say that we are determined to let no avenue shut down before we’ve tried it, no stone be unturned, or miss shouting from a rooftop.
My best rooftop, right now, is a cyber roof.
And this is mine.

Lest anyone forget, this is my beautiful daughter, Marta, above.
And that picture was taken this past Saturday, the 15th of May.
That’s an notable day in that I was in DC, hoping to meet Michelle Obama. {no, really….} Michelle Obama was in Merced, speaking. We missed each other.
Yes, I’m kidding. Mostly.
But the 15th is also a day when my Marta was supposed to be home and we were supposed to be pantomiming to each other in a desperate bid to communicate, and laughing as we failed once again.
But she is not here. So I have decided to shout from my cyber rooftop and send an open letter to our First Lady. If any of you are good pals with her, please pass this along.

Dear First Lady,

I am writing to you out of sheer, shimmering, waning hope. It is the hope of one mother, reaching out to another mother.
It is, to steal a phrase, a call to hope. A call to change.
But this time, the change and hope are those of a mother, of a family, of a girl. That one, in the picture above.

That is my daughter, Marta. She is currently in Addis Ababa, Ethiopia. On March 31st, 2009, she legally became our daughter. She was so, in our hearts and souls, for the past year. She is staying in a foster care home until our government allows us to go and bring her home. You see, she got stuck in the rollout of the new TB screening protocols of the CDC. But this is the catch: she doesn’t need screening. She’s had TB. She has successfully completed documented treatment for TB. But since she will always show a scar on her xray, the CDC protocol shifted her forward to the sputum culture requirement and that takes eight weeks to clear. And so she is stuck, away from her home and family.

We have spoken with as many people as we can find about this at the CDC and US Embassy and many have agreed that it is an “unfortunate” snare. But we have also been told that this sort of protocol certainly can’t just be changed for one girl, or, as we also believe, that an adopted child can be considered a different class of immigrant and be allowed to come home. That just can’t be done.

Mrs. Obama, respectfully, as a mother, I ask you, “Why not?”

Why can’t we change this?
It’s a bureaucratic hitch. It’s not what anyone intended. It’s not what is best for the child or any children who are affected by this. My husband (a physician), the W.H.O., even the man who wrote the instructions for this protocol at the CDC, agree that the data shows that a child who has gone through TB treatment is no risk to the public, and suffers by being kept from the love and care of their family. Instead these children are kept for months in orphanages, without the level of love, care and provision they would have here at home where they could begin to grow and thrive and learn to love in a family again.

This protocol for immigrants is an effort by our CDC to lower the incidence of TB. That is an admirable effort. However, in this application, to the adopted children of U.S. citizens, it becomes instead a trap. It is a trap for our children that does nothing to lower the incidence of TB in the world, rather it might even make it worse by keeping vulnerable children in difficult conditions; those not conducive to optimal health or healing on any level.

It puts our children in the category of “other.” “Stranger.” “Risk.”
They are not “other.” But they are being treated as such.
They are not a risk or threat. They are OUR children. America’s children.
Already.

Mrs. Obama, you are the woman who represents hope and change and action in our nation.
So, I want to ask you if we can look at this closer…indeed, if we can hope?
Can we dream and make change?
These are our children. The children of U.S. citizens.
They are our hope, as all our children are. These children are the embodiment of hope, for our families, for our country, for each other. They are living waiting breathing hope; waiting for their families, their legal, matched, real families, to come and get them to bring them home.
They wait.
They dare, still, to hope.
They dream, even so, of change.

Any mom, but most certainly an adoptive mom, lives hope every day.
She dreams of and for her children.
She sees the challenges and faces them as clearly as she can, even while she yearns for the best for her child.
You are the First Lady, as well as the “First Mom.”
You understand this.
You see the challenges of our nation’s children, face them clearly and you hope and work for change and for them to live to their fullest potential.
These children, the orphans who have been adopted into our families, are our children, our nation’s children and all of our future as well.

So, I am appealing to you.
Some will laugh at me, again, and point and say I am a fool.
But I don’t care. I can take it, I am a mom.
Any mom will advocate – as far and high as she must – for her child, for her children.
Marta is my daughter, my child. And she needs to come home.
The other children caught in the trap of this protocol are the children of American moms, our children. And they need to come home.
You are a mom. You are the “First Mom.”
I think, if you can know of this, you would understand… so, foolishly perhaps, I appeal to you.
You know that any mom will try to change the world if she has to, for her child.
Because, we can. Yes, we can. We are mom’s. And we hope.

Thank you for your time and attention reading this, if you do.
Thank you for your willingness to step out to face the challenges.
Thank you for being willing to make change happen.
This may be a ridiculous shout into the cyber void.
But thank you for the hope.

Respectfully,

Michele Gautsch
schoolmom5@comcast.net

>Dads United. Coffeedad’s letter

>This post is from Coffeedad. It’s his turn. This letter is his, the dad side of things, and from his perspective as a Father, and also as a physician.

This letter is an open letter to anyone who has a heart to hear us and also wants to know why we are pushing so hard.
Why don’t we just quit and accept that we have to wait?
Stop being so pushy already…sheesh. Right???
NO.
We are advocating for our daughter to come home because she needs to be home, because we love her, because it is right to allow her to travel to join her family.
We are advocating for this protocol to change in it’s application to adopted children because to apply it to adopted children, especially those who have already completed treatment for TB and/or who are HIV+ is, simply, wrong.

So we won’t quit.
We will fight for our child.
We will fight for these children.
Here is Tom’s letter. Please read it. Please forward it, along with mine, to anyone who might hear or listen or get it to anyone who can.
Thank you!

To Whom it May Concern:

This is a picture of my beautiful daughter, Marta, above.

My wife Michele and I have recently become the parents of my new 12 year old daughter Marta. Marta is Ethiopian, and sadly left orphaned by the ravages of AIDS in her country. Without any family, she was taken into an Ethiopian government run orphanage in Addis Ababa. Somehow in her young life, she also contracted tuberculosis for which she has recently completed eight months of standard tuberculosis treatment, with thankfully good response and several follow up sputum smear tests, all of which were negative. On March 31 of this year her adoption was finalized and we legally became her parents. Both Michele and I are United States citizens. Had our adoption become finalized just one month earlier Marta would be home with us now and I wouldn’t be soliciting your help.

The day before we were to travel to Addis to pick her up and bring her home we were notified by the Embassy through our agency that she would not be cleared to travel for a minimum of two additional months, and perhaps longer, due to very recently implemented new CDC Technical Instructions for the Screening of Immigrants. This new protocol requires negative sputum cultures in anyone with any suspicion or history of tuberculosis, without any regard whatsoever to whether it was known or unknown, treated or untreated, successfully or unsuccessfully.

This very burdensome and overly stringent requirement has been implemented only by the US and only piecemeal, in regard to some countries, despite the fact that the CDC and World Health Organization as well as the American Thoracic Society and the Infectious Diseases Society of America all individually or in collaboration have reported that:

“patients with drug susceptible pulmonary and other forms of infectious tuberculosis rapidly become noninfectious after institution of effective multiple drug chemotherapy” – A.T.S., CDC, I.D.S.A.

“after 14-21 days of treatment, infectiousness averages less than 1% of the pretreatment level” — A.T.S., CDC, I.D.S.A.

“as yet no case of clinical or bacteriologically confirmed tuberculosis disease associated with exposure during air travel has been identified”
— W.H.O

“the overall public health importance of such events [potential transmission of tuberculosis during air travel] is negligible” — A.T.S., CDC, I.D.S.A.

Three weeks before our scheduled Embassy Visa appointment for her, the CDC implemented their new guidelines in Ethiopia and a few other countries only. If Marta were from China, India or Russia or any one of a hundred other countries, her negative sputum smears would be sufficient for the CDC, and the State Department would issue her Visa and allow her to travel. What is more, if we had given birth to her while living in Addis Ababa and she was now coming back to the United States with us for the first time, she would not be subject to any kind of screening at all. If she was coming on a student Visa, a work Visa, a visitor’s Visa, a diplomat’s Visa or any one of 50 other Visas she would be here now and also subject to no screening.

The injustice of this situation is compounded not only by the very questionable medical basis for subjecting her to it in the first place, when virtually every one of the other 300 plus passengers on any flight here from Addis Ababa is not subjected to any kind of medical screening and statistically at least one of them or more will have active tuberculosis, and dozens are likely infected, but the situation is further worsened by the Embassy’s false assertion that no one there has the authority to waive her CDC required two month long sputum culture test for any reason and the CDC’s Department of Quarantine assertions that no one there has the authority to direct the Embassy to waive the requirement since the CDC is only advisory to the State Department.

I had a long conversation this week with one of the head doctor in the Atlanta Office of the CDC Division of Quarantine who could not refute any of my above assertions, acknowledged the inconsistency with which this screening algorithm was being applied and even that the legally adopted minor child of US citizens was a very different “immigrant” than the general immigrant population for whom the Technical Instructions were written. Nevertheless, he also told me that they would not waive the testing requirement for Marta or anyone else and that they would also not process our I-601 medical waiver “for persons with Class A or suspected tuberculosis” on the technicality that until the two month test was over, her medical evaluation was still incomplete. If after the two months that the test takes, it came back positive, then we could use the waiver. This loop invalidates the use of this waiver; it negates it’s use.

My request for your help is two fold. First, please help us get this test waived by whoever has that authority and get my Marta, child of US citizens, home now. Second, please realize that many, many other families who have or are in the process of adopting orphans are caught in the same net since all children with positive HIV tests are also subjected to it and that an ultimate solution is to recognize these legally adopted children of US citizens, as “US citizens” when the adoption is finalized not after they have come to US soil.

I can supply copious medical documentation of the marginal impact of this sputum culture requirement on the importation of tuberculosis and the negligible or non-existent risks of infectiousness to travelers and our citizenry for persons who have received or are receiving treatment for tuberculosis and have negative sputum smear tests.

Please consider this letter with a mind to what is right and decent, and with the medical data supporting our case. If you are a father, please consider if this was your child and what you would do. Please help us bring our daughter home and change this policy for adopted children, our children.

Sincerely,
Thomas L Gautsch, MD
tlgautsch@comcast.net

>Mothers connected united

>It’s Mother’s Day. And I’m missing my daughter.

So, I’m stewing and reaching further and further the only way I can in my effort to bring my girl home. I’m sending this out to the world of moms, a plea that is relying on our connectedness, our unity as moms.

You see, you all know that we are having a hard time getting the right person to hear us. To HEAR us, see us, really look at this as a real live girl who is stuck away from her family, her mom….

And so today my mind is spinning..who can help people be heard? Who gets heard and seen? If Oprah Winfrey had a daughter stuck in this, would she be heard? Would Hilary Clinton be heard? Would Michelle Obama? Do you have to be a major world leader or celebrity to be heard or seen?

I don’t know….but I do know the power of connection.
I know the power of women to reach out to each other.

I know the amazing surprising connectedness of the blogosphere.

So, I’m taking a giant step. I’m posting this letter. It is a letter that was sent to join with other stories of the human cost of this policy. It’s about us. It’s about what this means to my family. This letter IS about us, our family, our daughter. However, this policy will snare other families, it already has and it will more. This policy has to change. So this letter is for the families coming behind us too.

And if you know anyone who might be able to hear and see this and make a difference, or just plain care….to try, to pray, to help – us or the next family snared by this..then please, pass it on.
Because we are united, we moms, I think…in wanting our children to be with us, safe, happy, ok. We want all the kids to be home, to find a home.
To come home.

That’s what we moms do….every day.

It’s long…but it’s real. It’s not meant to be along whining rant: it’s an attempt to show the layers of personal cost. Thank you for indulging a mom who will do whatever it takes to get her daughter home safe, now.

To whom it may concern:

We have a daughter in Africa, an AIDS orphan . . . placed in limbo by our own government. We are Tom and Michele Gautsch, we live in Tennessee. Tom is an Orthopedic Surgeon and Michele is a full time mom. We have a total of eight children now that we have adopted Marta (12 yrs old) in Ethiopia. Three of our children are biological and now five are adopted, three from the U.S. and two from Ethiopia.

We are very, very anxious to unite our family. We had the unfortunate timing of our court date being scheduled just behind the new TB screening regulations and we have been stopped in our effort to go and bring home our daughter, Marta, from Ethiopia.

We passed court successfully March 31, 2009, after just short of a year of work in the extensive adoption process. According to the Ethiopian government, Marta is our daughter in all ways, most certainly, legally. We know she is our daughter not only legally, but spiritually, morally, ethically – in all ways, she is our daughter. However, on March 23, 2009, the U.S. CDC began phasing in new TB SCREENING requirements, and it is the rigid interpretation of this protocol which is preventing us from bringing our daughter home, for at least two more months and possibly many more. Marta is a post tb patient, however her tb left a scar on her lungs, and thus on her chest xray. It will never be normal. The rigid application of this screening protocol doesn’t allow the panel physician to clear Marta to travel, even though she has a known tb status: post treatment. This protocol was for screening unknown tb status. Our Marta’s status is documented: adequate treatment, successfully completed.

The screening that Marta is being delayed for has never been proven to effectively reduce the rates of tuberculosis in the immigrant population. In fact, the vast majority of first world countries don’t do this screening at all, and the ones that do, screen the immigrants after they arrive in the country. If we were British, or French, or Norwegian, Marta would be home with us, right now. The CDC has arbitrarily decided to implement this policy in only twenty countries. There are seven countries with a higher endemic incidence of TB than Ethiopia, where the CDC does not require screening with TB cultures. If Marta was from China or India, both countries with ten times more TB prevalence than the U.S., she’d be home right now.

Our family was supposed to travel Saturday, April 25th to Addis Ababa to meet our daughter again and bring her home. We had an Embassy appointment for our visa scheduled on April 29th. On Friday afternoon, April 24th, the day before we were to travel, we were called by our agency and told not to come. This news, to say the least, was devastating. We had spent the past many weeks organizing and preparing for our trip. We had to make arrangements for the younger children to have a good caregiver in our home, plus of course prepare them for our time away. We had been gathering and organizing and packing our donations and humanitarian aid for many weeks. Thomas, the dad, had to make extensive arrangements to be away from his solo surgical practice, schedule patients for surgery around his planned trip in order to maximize their care as well. By Friday we were packed and ready to go, the excitement at the house was at a peak for all…until that call came. Then it all came crashing down.

In disbelief, Tom started manning the phones, trying to find a way, any way to talk to someone about this. Michele was simply devastated, crying, trying to console the kids while her heart was breaking. Tom spent until almost four a.m. researching the protocols, the actual risks of a post TB patient and learning the data on TB in immigrants in the US and around the world. He spoke with contacts at the CDC, as far away as Kenya, and everyone said, “This is silly, she should be able to travel, she’s post treatment.” So, until sometime after 4 a.m., the morning of the 25th, (we had to leave by 5:30 a.m.), we hoped to still make our flights and go meet our girl. However, we hit a wall of bureaucracy and were told, again, in the early hours of that morning, “don’t come.”

And so we did not go. Full stop. We have been wracked with worry over our daughter and depression over the situation. This manifests physically, in all the normal ways. It is hard to not be depressed, it is hard to kick back into the regular cheerful routines of a busy family life.

On a practical, material level, this has also had a tremendous cost. For Tom, he lost a week of work. When you schedule 10 days out of a solo surgical practice, it is not a simple matter to just fill your work schedule back up on the spur of the moment. You lose the days and the income that would have been generated. In fact, you continue to pay the normal operating expenses, but are not, literally, operating. This would have been a planned financial cost. But now, having to plan for an entire new trip, we will have to incur it twice. That is a very significant, large, financial burden. Of course our plane tickets, six of them, had to be returned, with penalties for cancellation and changes. Many other summer plans have had to be reworked and still have not been able to be figured out; this delay affects our children and extended families and their plans – put on hold – as well. Our bags of humanitarian aid remain stacked in our foyer. Our suitcases with personal clothes have been unpacked, but our smallest children still ask when we are going, confused.

For Marta’s health, she needs to come home and have adequate nutrition, safe surroundings and the love of a family to help her heal from the many traumas she has experienced in her life. Staying in an orphanage, half a world away from her parents and family, does nothing to help heal the heart and body of this child, our daughter. Even several months away from her family makes a difference to a child, especially one this age and with her life experiences.

The hardest part, perhaps, for our hearts as parents, is Marta’s experience. Marta is not a toddler or infant. She is an older child. She is twelve. So she has awareness of what is going on, but is not yet old enough to fully understand the details. Any older orphan, in particular, is going to really wonder if it could possibly be true: “do they really have a family? For real? Is it really going to happen?” Because to an orphan, one who has already lost both her parents and everything she ever had, ANYTHING can happen and NOTHING is forever or for sure. And this is what our Marta now has experienced: she wondered if we were really coming…they said we were. But – we didn’t show. And that was explained to her, they said, and they tried to make her understand the delays and that we would come as soon as we could. However, even if her head can hear and understand a bit of the explanation, what is imprinted on her psyche and her heart is the confirmation of her deepest fear: we didn’t show. Period. And that will have a long term cost to this young girl, and our family, that you can’t measure in computer data.

The CDC cannot measure the scar that is left by this. They can quantify the scar left on her lungs by the TB. But they cannot, nor do they care to, measure the scar left by this unwarranted delay. We can, we will live with it and try to help her over it. But this didn’t have to happen.

This can be changed with a simple decision to see Marta as an individual, as a patient if you like, but best, as a child. Marta is not a random immigrant who will vanish into the unknown masses in our country. She will not drain the country’s resources, nor will she be a risk to the health of the greater population. She is our child. She is coming into a family where her dad is a doctor. We had to prove we were willing and able to care of her, to the fullest extent, in every way and document this with Homeland Security, even before we were allowed to proceed with the long adoption process. We think you would be hard pressed to have a more documented or well tracked person come into the U.S. than an adopted child.

Marta is a child of U.S. citizens, her life and family is here. She is our daughter, and she needs to come home.

Sincerely,

Tom and Michele Gautsch
schoolmom5@comcast.net
tlgautsch@comcast.net

>What’s the goal, really?

>As many of you know, our family is being held up in a bureaucratic snare. A trap, a mill…call it what you will. We are coming to think of new terms for it. We will admit, we are frustrated.

We are receiving the run around, ever so politely expressed, but that is what it is. Our inquiries, indeed, the inquiries from senator’s offices even, are being punted back and forth like a football: “We are not in charge of that.” “They oversee this decision.” “That would be the __(fill in the blank: CDC, State Dept, Health and Human Services)_____ domain.”

And so it goes, no one wants to own this, no one wants to really look at it and see what is being said.
And really, we have decided, that no one really wants to look at what is not being said.

So we will. It is not politically correct. I don’t care anymore.
Everyone has said, “It’s not personal, please understand.”
I beg to differ.
It is very much personal, and I don’t understand.
Not at all. Or, actually, I think, we do all too well.

Let me back up. This is the quick summary of the trap: The US CDC has determined to put in place screening measures for all immigrants for tuberculosis. This sounds like a reasonable and reasoned, thoughtful measure. Until you start examining the data. And you realize that most first world countries do not do this, rather, they screen immigrants once they have arrived. And then, if needed, they treat them.

However, our country has decided that the rates of TB have risen enough that they need to do something. And so they have put in place sweeping protocols to screen for tb. Our country has decided to screen immigrants before they arrive on our shores. These are called the 2007 technical instructions. The problem is, these do not outline what to do if a person already HAD tb, and had already been treated. [The 2008 technical instructions for immigrants already in the US expand on the 2007 and they point out that any person who has already been treated, does not need screening, and in fact, may travel freely.] Therefore, any person wishing to come to the U.S. must have a clear skin test, or chest xray or 8 week sputum culture. Period. That sounds reasonable, doesn’t it?

Does it?

What is this really?
Dare I suggest, this is a case of “other.”
Us. Them.
We are here safe and sound in our country. I believe this is a protective measure, but misplaced. I love my country, don’t get me wrong. But ‘they’ are there, and we don’t know what ‘they’ have that might hurt us. And so ‘they’ have to be screened, and kept there until we are sure ‘they’ are “ok,” right? Right?

Do they? What’s the goal? What does that mean?
Is this a measure to lower the levels of TB in our country, only? Is it a measure to lower the levels of TB in other countries? Or is it to keep out risk, or those who are “other?” Is this a question of comfort? Are our levels of comfort being challenged? Well, I think so. This screening is not being done, for instance, on European immigrants, nor Chinese, nor East Indian.

Should children, any of them, of American families, be swept under this measure?

The reason I question all this is because this policy is being applied to kids, without seeing them as individuals, each unique. Kids. It is not being applied foreign temporary workers, not students, not most of the immigrants who arrive on our shores: adults who can easily slip into the system and disappear. This policy, in our particular case and others too, is being applied in broad sweeping strokes to kids. Our kids. Our Ethiopian kids.

Hmm. Look closely. Who are “they?” Are they dangerous to us? Really? Is their goal to come into the country and infect us all? Or to milk the system and our resources? I don’t think so. These kids have one goal: find a family. Find a safe place and a home. That’s it. Do we need to think of these kids as a threat somehow to us? Um, no. Are we at risk from them, these children, really, are we? No. The data supports that. Coffeedoc is more than happy to provide it to anyone interested. The CDC should be too.

This is Christmas dinner at the government orphanage where my daughter lived. This is what
they had as a special celebration feast. Hard to get better, if you DO have tb or any illness on that diet, don’t ya think?

If we were really screening for TB as a matter of compassion and concern for health, wouldn’t the answer be that if you found TB, you would bring that kid home to their family so they could be treated swiftly? Really? Or is it better to leave that child who has a family here, there, alone, sick and scared where they can’t even get the proper nutrition to support the medicine?

We have been told that the CDC is trying to keep our communities, our family, the population at large, ‘safe’ from infection. Um, really? Because on that plane coming home, it’s almost exclusively a population that has been walking around being exposed to all sorts of viruses and infections, utterly unknown in type or quantity. How does letting a child who has already completed treatment for TB keep that community ‘safe?’

I know. You are rolling your eyes, thinking, “she’s on a rant.” Maybe.
But I am tired of this.
This is a stigma.
There is a stigma against scary words and labels: “HIV+” “TB” “Immigrant” “Virus.”
I’m tired of the stigma, of wondering if I can say that my daughter had TB.
Well, she did.
My daughter had TB. She was treated for it, successfully.
She’s over it now.
But they won’t let her come home, because of arbitrary, political, well meaning but misapplied protocols.

But look closely, just below. These aren’t adults. These are children. Our children. This is their Christmas dinner, again. Do they look like something we should fear, somehow?
Are they, really, “other?”
So, I am asking again. What’s the goal, really?
Is it to help with compassion, to help find and treat a treatable disease? Is it to help lower the rates of this worldwide, as the world leader our country is and should be? Is it to help these children be united with a family? Or is it, to somehow attempt to protect, ineffectively, “us.” I’m asking. What’s the goal?