Spokane7
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October 26, 2011 in City
Baby could fall through hole in safety net
Michelle Casey, pictured with dogs Bacchus and Cassie, is expecting a daughter to be born in December. An ultrasound revealed the child has a bilateral cleft lip and palate.
(Full-size photo)
When Michelle Casey received the first ultrasound of her second pregnancy, she got some unexpected news.
Her daughter had a bilateral cleft lip and palate. The ultrasound technician reassured her, “Oh, yeah, one or two surgeries at Shriners (children’s hospital) and you’ll be good.”
The next day, her obstetrician told her she’d be able to breastfeed.
Wrong, wrong and wrong. It was only after Casey met with Laurie Vessey, a public health nurse with the Spokane Regional Health District, that she learned Shriners doesn’t handle cleft cases, that her daughter would not be able to breastfeed, and that her daughter would need four surgeries in her first year alone.
“Every physician we’ve spoken to, whenever we ask questions – even before we ask questions, actually – they say, ‘Have you talked with Laurie Vessey?’ ” said Casey.
But Casey and hundreds of other parents of children with cleft lip and palate probably won’t be talking with Laurie Vessey much longer. The district is eliminating the program Vessey coordinates, the Maxillofacial Team, as part of an 8.7 percent budget cut that includes the elimination of programs for kids with special health care needs.
By the time Casey’s daughter is born in December, she’ll be joining a different kind of Spokane County – one that no longer helps families coordinate the massively complex series of surgeries, health concerns, decisions and misinformation involved with cleft programs. It is one of so many publicly funded programs being cut or changed these days, it’s almost redundant to mention it.
But cut by cut, it’s important to remember these changes are not mere rhetorical exercises.
“Budgets are tight, and it’s everywhere,” said Vessey, a public health nurse for nearly 20 years who will be reassigned if the cuts are finalized. “It seems that not only the health district but a lot of supportive services these days are being pulled from very young children and women. … Compared to what things looked like 20 years ago, there are really no safety nets.”
There is debate about the wisdom of this particular cut. With a budget of $170,000 a year, it’s not hard for people to select other savings they believe would make more sense. The district says it’s cutting the program because it simply has less money each year and must make difficult choices among its 30-some public health programs.
“It’s heartbreaking for us,” district spokeswoman Kim Papich said. “We have a lot of sympathy for the parents.”
There is a squeaky-wheel element to this. Parents involved in the program have been well-organized and savvy. Four years ago, when the state proposed cutting its funding for the program, parents organized, lobbied, went to the media and fought successfully to save it.
It’s hard to imagine, say, heroin addicts relying on the methadone program to do the same. But we need to treat opiate addicts. And people with HIV/AIDS. And and and and. If there is a discouraging note in the parents’ activism for the cleft program it is this one: An argument from some that their innocent children deserve the money more than drug addicts or people with AIDS.
But hey – that’s who we are now. We’ll never raise a tax, not on candy or millionaires or face lifts, and we’ll let the kids with birth defects fight it out with pregnant drug addicts to see who’s more deserving.
The current budget proposal – including overall cuts of $2 million and a reduction in staff of nearly 8 percent – was announced just three weeks ago, and parents felt blindsided. Though Papich said the district undertook a rigorous evaluation of programs, there wasn’t any public discussion until parents pressed for a meeting, at which the cuts were presented as a fait accompli.
“I think if you are going to end a program like this that’s been with the health district for 41 years, it probably shouldn’t be done suddenly, for the sake of the kids and continuity of coverage,” Vessey said.
So, I asked Spokane’s top expert on cleft lip and palate, is this being done too abruptly?
“I’ve only known about it for 10 days,” she said. “The vote’s on Thursday.”
The coordination of care for children with cleft lip and palate is an immense task. It’s the No. 1 birth defect in the country, and Spokane County typically has a higher-than-average incidence of it. Children with the condition face decades of surgeries and medical care to address problems with eating and nutrition, breathing, speech and hearing, appearance and many others. Vessey’s program coordinates a team of surgeons, doctors and other specialists for families in 11 Eastern Washington counties.
“There’s so much involved that people just have no idea,” said Kari Almeida, the director of a local network of parents of children with cleft lip and palate. “My son sees eight different doctors.”
Could someone else in the community pick up the program? On the face of it, it doesn’t seem so impossible that a hospital might do it – but no one’s lined up to volunteer just yet.
Meanwhile, Michelle Casey is due Dec. 5. If the budget proposal is adopted, she and her daughter will get initial visits from Vessey right after birth.
“Then, after the 31st,” she said, “it’ll be cut off.”
Shawn Vestal can be reached at (509) 459-5431 or shawnv@spokesman.com. Follow him on Twitter at @vestal13.
The draw of the unknowable 
Scoutster on October 26 at 5:35 a.m.
Yup…we are down to the bone now.
I suppose the folks who want to “Take Our Country Back” see stories like this as a huge victory! No new taxes! Way to go!
Let’s go all the way back, shall we? Let’s start treating vulnerable people with the same resources we devoted to them in 1789!
Think how much we will save, and nowhere in the Constitution does it say we are obligated to serve our children with cleft palates.
mikeln on October 26 at 6:42 a.m.
Rome has already burned, we are now kicking through the ashes to see if anything survived. Oh yes, I found somthing, tax cuts for those that could pay more to help thier fellow humans wern’t even scorced, nice going mankind.
polistra on October 26 at 7:07 a.m.
The most infuriating thing is that solutions don’t need to be invented. No mystery at all. Plenty of countries have already solved this problem with various single-payer health plans. Even Turkey does it better, for Christ’s sake! (Or for Allah’s sake, whichever you want.)
opiemuyo on October 26 at 8:15 a.m.
Wow, how different I must be. I do not wait around for someone else to solve my problem,(government) I take care of it myself. Must be my pioneer forefathers and foremothers.
mikeln on October 26 at 8:33 a.m.
Wow, you must be quite wealthy to afford thousands in the costs of this affliction. By the way the ability our forefathers had is gone, replaced by the corporate teat.
smildren on October 26 at 8:50 a.m.
Shriners Hospitals for Children in Spokane is looking into adding this service/treatment to our offerings again. In fact, we held a meeting with SRHD staff recently to discuss a possible collaboration. We don’t want to see these children go without services either! Thanks for your support Spokane!
shawnv on October 26 at 8:56 a.m.
The program doesn’t cover most of the costs of the affliction. Parents like the Caseys will cover their own medical expenses. The program provides coordination among the many, many types of services and specialists they must deal with, and accurate, consistent information.
Also, a caller this morning corrected an error: Shriners doesn’t now do cleft lip and palate surgery in Spokane, but other Shriners hospitals do.
libmark on October 26 at 9:30 a.m.
opiemuyo — Got it. You must be the one that I see out there on the I-90 right of way building your own darn freeway. And the one out there building your own school. And the one hiring your own police and fire protection. And building your own airport. And raising all of your own food. And producing all your own drinking water. And building your own car. And dealing with your own sewage. And generating all your own energy. And constructing your own mythical, magical world where you do everything on your own without any help from anyone or, gawd forbid, any government assistance. And if something truly necessary comes up and you can’t pay for it entirely by yourself, then by gawd you’ll just do without! If only we had more problem solvers like you.
Bruce (aka thatoneguy) on October 26 at 10:23 a.m.
Reading comprehension, anyone?
MrNatural on October 26 at 10:52 a.m.
Very good article Mr. Vestal for those of us who feel compassion and have an understanding for our community’s vulnerable afflicted with this condition. The Health District’s programs that aid our communities at risk populations have been rendered to such a degree that the only thing left for many people in our community is suffering. How on earth anyone can turn a blind eye to another’s suffering is beyond me.
Here’s hoping the programs funding is sustained
libmark on October 26 at 11:26 a.m.
WBC — I tend to get incensed when the self-righteous say “Those who benefit from public programs must be lazy, stupid, evil, and irresponsible…. but not me, I’m different. My forefathers and foremothers taught me better.” Here’s a tip: opiemuyo isn’t different, Michelle Casey isn’t different and you’re not different.
As for government providing for every need, I say that if by working together with my fellow citizens we can do something better than I can do as an individual, then that is the proper role of government. Who came up with that line of socialist propaganda, you ask? Abraham Lincoln, the great enslavenator.
Source: The legitimate object of government, is to do for a community of people, whatever they need to have done, but can not do at all, or can not so well do, for themselves in their separate, and individual capacities.
— A. Lincoln, July 1, 1854
Scoutster on October 26 at 11:58 a.m.
Opie and Carter…
I think you have a legitimate, Libertarian point of view.
My question is this: If a baby is born with a disability, it is not his fault, would that be correct?
If so, and if the parents cannot afford an essential treatment, what SHOULD be done?
Let the baby die?
Euthanize it so we don’t extend the pain?
Should the treatment be done by the rest of us thru tax dollars?
Should we rely only on charitable giving?
Something else?
Any ideas?
mikeln on October 26 at 12:29 p.m.
If the trucks stop rolling into wal-mart people like opie will have a very short life. If this was truly a government of the people, for the people things would get done. The sad fact is we now have a bought and paid for government that takes its orders from a few. This is a needed program that works and I can only hope the shriners will take up the slack created by the greed of those few.
Note_to_Self on October 26 at 12:55 p.m.
I would be willing to bet that neither opie nor WBC had a child born with this kind of disability. Without public assistance, the number of surgeries required would bankrupt most families. Is that the kind of society you want to live in? My apologies if I’m wrong about that.
Welcome_Black_Carter on October 26 at 1:18 p.m.
LibMark, I completely agree with you and AL’s comments, but at what point do we draw the line? Both you and Scoutster bring up valid points on this issue. These types of things are very difficult and create difficult decisions. I guess for me, where I draw the line, is that many of these issues should be personal. People should prepare and make good decisions prior to bringing a child in the world….I know this is not the case nearly enough….and no, I do not think the children should be suffering. It just frustrates me in general that the gov continues to grow and provide service after service after service after service. These dollars must come from somewhere.
NTS…you are right in your assumption, I do not have a child with special needs. I do however, have planning in place and have saved a significant nest egg for when/if I am blessed with a child. Further, I and my spouse have undergone a simple genetic test to see how well things match up. If we decide to have children we are aware of the likely outcomes or potential problems.
People should be responsible for themselves for the most part, especially when bringing children into the world. The real problem is fragmented families and moral decay in general. Nobody seems to care to plan ahead…..have more kids…get on the gov dime…..then promote yourself as a victim because you are in this situation as to no fault of your own.
Difficult situations yes…..but throwing money after everything by the gov does not make society better overall. My opinion.
Bruce (aka thatoneguy) on October 26 at 3:10 p.m.
This comment thread no longer has much to do with the subject of the article.
The program they’re talking about cutting does not (if Shawnv’s comment at 8:56 a.m. is to be believed) pay for surgeries, but merely helps with coordinating the various types of services that the parents are going to need (and pay for themselves). The budget for doing that is what’s being cut. Here’s how I understood what was in the article:
–Expectant mother: “OMG I just found out my baby’s going to be born with a cleft palate. What do I do? How do I take care of this? Who do I need to see? What kind of surgery is she going to need? Who does these operations?”
–Laurie Vessey: “Take a deep breath. I can help you with this. Here’s what you have to do. Here are the people you’re going to have to call, here are the clinics that do the surgeries she’s probably going to need — by the way, here’s a list of the surgeries she’s probably going to need — here are the names of some support networks and organizations that can help you understand what’s going on.”
—Expectant mother: “Gosh! This will really help. Thank you!”
—Laurie Vessey: “No problem. It’s my job.”
—Expectant mother: “And can I call you if I have more questions down the road?”
—Laurie Vessey: “Yes, but only until the end of December.”
=======
Presumably Vessey’s program also provides information on where the parents can go for help if they can’t pay for the necessary care. The article doesn’t say anything about that.
misjustice on October 26 at 3:40 p.m.
Mr. Black Carter,
This is the second day in a row that I have flagged a comment of yours. Is there anyway that you could refrain from calling folks “retard” or anyother kind of “tard”????
It’s offensive and really not necessary in order to make your point, whatever it is.
Sarah Palin, and other parents with “retarded” children are offended by such remarks and even I find it offensive; although I do not have a child which is developmentally challenged, it’s the type of school yard-bully-taunt best not indulged in here.
Love,
MisJustice
misjustice on October 26 at 6:04 p.m.
Thank you moderators.
Now, a comment on the story:
My heart goes out to any parent facing the challenges that Ms. Casey faces. It is morally wrong that we, as a nation, can some how find the money for the war machine but can not find it for those among us that need it most.
I implore the Health District to reconsider defunding this 41 year old program. And I encourage others to contact the District to voice your support for the program. To make it easier for folks to make their voices heard I’ve looked up their on-line contact information.
Here is the contact link:
http://www.srhd.org/contact/
JBlack on October 26 at 7:07 p.m.
In full disclosure, I am Mr. Casey. I would like to say that Bruce as thatoneguy, was accurate in his description. To add a bit to the personal story though, this is our second daughter, and the only one that the doctors actually talked to us about aborting. We would never consider that and it took everything within me not to punch the doctor at the time. That’s my little girl they want me to “terminate.”
To those who have said we are asking the government to finance us, I would like to say you missed the point and let your prejudices replace the facts of the article. Shawn did a great job, but I would like to add the following facts so you can see if your judgments hold true:
1. My wife and I have saved up money and planned insurance coverage for a child. We did that for our first child and are doing it for our second.
2. There are 300 kids in this program and it costs $170,000 a year. I would gladly pay my share of the $566 per child that it requires, just tell me who to pay. I plan on offering my personal resources to help this program survive, because if the knowledge Laurie provides saves just one child from being “terminated” because they don’t have perfectly formed lips then it is worth it.
3. My wife and I are highly educated, and based on the numbers and probabilities my daughter is likely to be highly educated and provide more return and pay more taxes to society than the $566 this program pays for her.
The problem with this cut is that for 20+ years the county has told all the doctors and families this is where you go to get knowledge and find out how to get a panel of doctors into the room (have you tried getting on that many doctors’ schedules?). Now they are giving 60 days and it is cut. The county has not explored moving this program elsewhere or asking for private funding.
4z on October 26 at 8:21 p.m.
Nice to meet you Mr. Casey! Let me tell you that you are in for one heck of a ride dealing with cleft lip and palate. Laurie is an incredible resource and the cleft team was soooo helpful to my family.
My son was born in April, and even after 3 ultrasounds we had no idea that little Gage would be born with bilateral cleft lip and palate. Within hours Gage was life flighted to Spokane, my wife en route via ambulance, and the rest of our life turned absolutely upside-down. Our 3 year-old asked, “Daddy, why does Gage have a lip on his nose?” Trying to explain this was beyond me, I knew little about clefts and faced a little baptism by fire. We spent 3 weeks commuting 100 miles a day to visit Gage in the NICU. Gage still has a feeding tube at the age of 6 months and will until after his first birthday. Other babies with bilateral cleft lips and palates have spent up to 6 months in the NICU until finally getting a feeding tube. CHILDREN DIE FROM STARVATION WHEN THEY CANNOT EAT!
My wife and I are both professionals, in our early 30s, have held careers for years, carefully planned our family, and have never relied on a public program. There is NO known cause for clefts. The view points expressed on this website show the lack of empathy that is reflective of a narrow mind. Live a day in the shoes of a cleft parent, it is challenging. The problems are unique, unusual, and even to a very educated person, FRUSTRATING! Having the guidance and know-how of the SRHD cleft program is essential. This is a problem that cannot be cured and must be dealt with. The program does not cover any expenses, it is simply guidance and information.
Children DIE and parents are prosecuted when cleft children die of starvation. I know for a fact Gage would haved DIED if it were not for the medical care and guidance that has come from the know-how of the cleft team. The cleft team is not just Laurie Vessey, but she is the glue that holds all of the doctors, surgeons, and specialists together. She also serves as the liasion between the professional community and the parents of cleft children.
Educate yourself about the needs of others before you pass judgement on a public program.
Attend the meeting at SRHD tomorrow to have your mind opened!