About Retinopathy of Prematurity

[Ms. Kathy]

Stanford Program Seeks To Increase ROP Screens
Despite longstanding and effective treatment strategies, ROP screenings lag.
Source Link: Review of Ophthalmology www.revophth.com/index.asp?page=1_13625.htm
Darius M. Moshfeghi, MD, Menlo Park, Calif.

Retinopathy of prematurity remains the leading cause of blindness in children in the United States. According to the National Eye Institutes website, 400 to 600 children become blind from ROP each year (http://www.nei.nih. gov/health/rop/#3). This represents almost 1 percent of the 60,000 to 80,000 premature infants eligible for ROP screening each year.1 It is more distressing when one considers that effective treatment strategies have existed for 20 years.2-6 In this environment, where treatment is usually effective if initiated early for appropriate levels of disease, the onus is on the medical community to ensure that all eligible patients are offered screening.

Unfortunately, the picture is more complicated. ROP screening remains the single highest risk endeavor in the practice of ophthalmology. In the face of high medicolegal risk with accompanying large financial settlements, many trained practitioners are simply unwilling to provide the necessary screening services. Additionally, these services are not well-compensated, often times being reimbursed by Medicaid. The American Academy of Ophthalmology commissioned a survey of its members who screened for ROP in 2006 and discovered that fully 23 percent of those already screening were planning on discontinuing in the immediate future (aao.org). The top reasons for discontinuing provision of these services revolved around financial issues—medicolegal risk, low reimbursement, lack of hospital support and complexity of patient care scheduling. To compound matters, the screening criteria were revised in 2006.7 These changes included the following: increasing the gestational age from 28 to 30 weeks post menstrual age (PMA), changing the initial screening date to 31 weeks PMA or four weeks chronological age (whichever is later), increasing the screening frequency for high-risk disease, and delineating termination criteria for acute-phase ROP screening.7 The cumulative result of these changes was to increase the number of eligible babies, increase the duration of the screening period, and to increase the number of examinations per baby per period. In fact, using the new criteria and applying it to the 2004 U.S. birth data, approximately 80,000 patients would be eligible for ROP screening, up from 60,000 using the old criteria.1,7 In the face of a 23 percent decrease in eligible and willing screeners and a 33 percent increase in eligible patients, the ROP screening paradigm needs to be re-examined.


The present gold standard for ROP screening is binocular indirect ophthalmoscopy by an ophthalmologist experienced in the sequential changes of ROP.7 This recommendation comes from the Policy Statement on ROP screening from the AAO, the Section on Ophthalmology from the American Academy of Pediatrics, and the American Association for Pediatric Ophthalmology and Strabismus.7 Interestingly, there has never been a study validating the reproducibility or reliability of this technique.


This is not a diabetic screening examination performed in the comfort of the office. Most ROP screening is initiated in the neonatal intensive care unit (NICU). These are small, premature babies with multiple medical problems and are prone to episodes of apnea, desaturation, bradycardia and tachycardia during the examination. The nurse is often right by the elbow gently encouraging the examiner to “move it along.” Oftentimes, the parent is at the bedside or just outside the room. It is in this environment that the bedside binocular indirect ophthalmoscopy examination is performed, following which a drawing is produced for each eye depicting the presence or absence of disease (See Figure 1). Fortunately, there is a common language within the framework of the International Classification of ROP to describe the findings.8,9 Still, I find it troubling that this method has not been rigorously investigated.


We know from studies on fluorescein angiograms that there is wide variability in inter-observer as well as intra-observer interpretation of findings.10-12 Typically, fluorescein angiogram reading is not in the same sort of stressful environment as the NICU ROP examination. Additionally, the fluorescein angiogram has the advantage of not being a moving target—while the observers may change in person or time, each frame of the fluorescein angiogram remains fixed for eternity. This is not the case in ROP screening, where each individual will create the drawing that he sees. These drawings, in my experience, tend to focus on the advancing edge of disease. It seems reasonable that there may be great disparity in the depiction of the status of the fundus from one individual to another in this sort of environment.


A growing body of evidence has been published on the utility of telemedicine for ROP screening using the RetCam (Clarity Medical Systems, Pleasanton, Calif.).13-25 Additionally, the PhotoROP trial results were presented at the Retina subspecialty day at the AAO. The PhotoROP trial was a multicenter, prospective trial to evaluate telemedicine screening with the RetCam relative to bedside indirect ophthalmoscopy.26 The preliminary results indicated that remote interpretation of RetCam images had a sensistivity of 100 percent and specificity of 97 percent when compared to bedside binocular indirect ophthamolscopy. Furthermore, the screening center readers recommended treatment two weeks earlier than the bedside screeners, possibly indicating the advantages of longitudinal examination with photographs.



Four years ago I initiated a series of discussions with the administration of Lucile Packard Children’s Hospital at Stanford University regarding the feasibility of providing telemedicine services using the RetCam II at their affiliated NICUs. I had been providing these services as a stop-gap after the long-time screeners had discontinued their services for the reasons outlined in the AAO survey. The end result was the Stanford University Network for Diagnosis of Retinopathy of Prematurity. SUNDROP is a community-based telemedicine initiative that relies on individuals in the NICU to identify patients eligible for screening, to photograph the fundus, and to transfer the images to me for interpretation. The basic model is a hub-and-spoke design familiar to the business traveler (See Figure 2). The goals are straightforward: 1) to perform screening examinations for ROP; 2) to identify patients that have a need for bedside indirect ophthalmoscopy; 3) to standardize the screening process within the community, 4) to provide access to subspecialty care to the community hospital; 5) to provide hard-copy objective documentation of the screening examination; and 6) to allow the patient to remain in the community NICU until referral-warranted disease is identified. We borrowed from the PhotoROP trial the concept of five standard fundus photographs in each eye, as well as an anterior segment photo (See Figure 3). Ideally, there are six photographs per eye. In each NICU, several nurses are identified to receive training in the operation of the camera. This training is provided by Clarity using one of their certified ophthalmic photographers. I then generally provide follow-up training as necessary. Once images are received by me, I generate a report within 24 hours outlining the interpretation as well as disposition for next examination.



SUNDROP does not seek to supplant indirect ophthalmoscopy, but rather to streamline the process, identifying the patients with the greatest risk for needing therapeutic intervention. The endpoints are straightforward—identification of referral-warranted ROP (RW-ROP), treatment, or discharge from the NICU. In the SUNDROP network, all babies discharged from the NICU are seen in my outpatient clinic within 72 hours for indirect ophthalmoscopy with scleral depression. Referral-warranted ROP has been classified to include Type 1 or Type 2 ETROP disease, stage 3 disease, plus or pre-plus, and threshold disease.



Presently, four sites are enrolled in SUNDROP. Acceptance of the technique and methodology has been high. Results of the first 12 months of the SUNDROP initiative will be presented at this month’s AAO meeting in New Orleans.

There is an increasing burden on the practitioners who provide ROP screening services, both from increased eligible infants as well as declining pool of willing screeners. Telemedicine screening for ROP offers the potential to leverage the skills of those few practitioners remaining who wish to continue providing these services.



Dr. Moshfeghi is an assistant professor of ophthalmology in Adult and Pediatric Vitreoretinal Surgery and is co-director of Ocular Oncology at Stanford University. Contact him at 1225 Crane St., Ste. 202, Menlo Park, Calif. 94025. Phone: [phone]; fax: [phone]; or e-mail: darius [e-mail]. He is on the scientific advisory board, Clarity Medical Systems (maker of the RetCam).



1. Martin JA, Hamilton BE, Sutton PD, Ventura SJ, Menacker F, Kirmeyer S. Births: Final Data for 2004. National Vital Statistics Report, 2006; 55(1):1-104.

2. Multicenter trial of cryotherapy for retinopathy of prematurity. Preliminary results. Cryotherapy for Retinopathy of Prematurity Cooperative Group. Arch Ophthalmol 1988;106:471-9.

3. Multicenter trial of cryotherapy for retinopathy of prematurity. Three-month outcome. Cryotherapy for Retinopathy of Prematurity Cooperative Group. Arch Ophthalmol 1990;108:195-204.

4. Multicenter trial of cryotherapy for retinopathy of prematurity. One-year outcome—structure and function. Cryotherapy for Retinopathy of Prematurity Cooperative Group. Arch Ophthalmol 1990;108:1408-16.

5. McNamara JA, Tasman W, Vander JF, Brown GC. Diode laser photocoagulation for retinopathy of prematurity. Arch Ophthalmol 1992;110:1714-16.

6. Hunter DG, Repka MX. Diode laser photocoagulation for threshold retinopathy of prematurity. A randomized study. Ophthalmology 1993;100:238-44.

7. Screening examination of premature infants for retinopathy of prematurity. Pediatrics 2006;117:572-6.

8. An international classification of retinopathy of prematurity. The Committee for the Classification of Retinopathy of Prematurity. Arch Ophthalmol 1984;102:1130-4.

9. The international classification of retinopathy of prematurity revisited. Arch Ophthalmol 2005;123:991-999.

10. Friedman SM, Margo CE. Choroidal neovascular membranes: Reproducibility of angiographic interpretation. Am J Ophthalmol 2000;130:839-41.

11. Holz FG, Jorzik J, Schutt F, et al. Agreement among ophthalmologists in evaluating fluorescein angiograms in patients with neovascular age-related macular degeneration for photodynamic therapy eligibility (FLAP-study). Ophthalmology 2003;110:400-5.

12. Kaiser RS, Berger JW, Williams GA, et al. Variability in fluorescein angiography interpretation for photodynamic therapy in age-related macular degeneration. Retina 2002;22:683-90.

13. Lorenz B, Bock M, Muller HM, Massie NA. Telemedicine based screening of infants at risk for retinopathy of prematurity. Stud Health Technol Inform 1999;64:155-63.

14. Schwartz SD, Harrison SA, Ferrone PJ, Trese MT. Telemedical evaluation and management of retinopathy of prematurity using a fiberoptic digital fundus camera. Ophthalmology 2000;107:25-8.

15. Roth DB, Morales D, Feuer WJ, et al. Screening for retinopathy of prematurity employing the retcam 120: sensitivity and specificity. Arch Ophthalmol 2001;119:268-72.

16. Yen KG, Hess D, Burke B, et al. The optimum time to employ telephotoscreening to detect retinopathy of prematurity. Trans Am Ophthalmol Soc 2000;98:145-50; discussion 50-1.

17. Yen KG, Hess D, Burke B, et al. Telephotoscreening to detect retinopathy of prematurity: Preliminary study of the optimum time to employ digital fundus camera imaging to detect ROP. J AAPOS 2002;6:64-70

18. Ells AL, Holmes JM, Astle WF, et al. Telemedicine approach to screening for severe retinopathy of prematurity: A pilot study. Ophthalmology 2003;110:2113-7.

19. Mehta M, Adams GG, Bunce C, et al. Pilot study of the systemic effects of three different screening methods used for retinopathy of prematurity. Early Hum Dev 2005;81(4):355-60.

20. Chiang MF, Starren J, Du YE, et al. Remote image based retinopathy of prematurity diagnosis: A receiver operating characteristic analysis of accuracy. Br J Ophthalmol 2006;90:1292-6.

21. Mukherjee AN, Watts P, Al-Madfai H, et al. Impact of retinopathy of prematurity screening examination on cardiorespiratory indices: a comparison of indirect ophthalmoscopy and retcam imaging. Ophthalmology 2006;113:1547-52.

22. Shah PK, Narendran V, Saravanan VR, et al. Screening for retinopathy of prematurity—a comparison between binocular indirect ophthalmoscopy and RetCam 120. Indian J Ophthalmol 2006;54:35-8.

23. Wu C, Petersen RA, VanderVeen DK. RetCam imaging for retinopathy of prematurity screening. J Aapos 2006;10:107-11.

24. Chiang MF, Keenan JD, Starren J, et al. Accuracy and reliability of remote retinopathy of prematurity diagnosis. Arch Ophthalmol 2006;124:322-7.

25. Chiang MF, Jiang L, Gelman R, et al. Interexpert agreement of plus disease diagnosis in retinopathy of prematurity. Arch Ophthalmol 2007;125:875-80.

26. Balasubramanian M, Capone A, Jr., Hartnett ME, et al. The Photographic Screening for Retinopathy of Prematurity Study (Photo-ROP): study design and baseline characteristics of enrolled patients. Retina 2006;26(7 Suppl):S4-10.

[Ms. Kathy]

Mother, daughter honorary ambassadors for March for Babies

By Frances Borsodi Zajac , Herald-Standard 04/24/2008
Source Link: www.heraldstandard.com/site/news.cfm?newsid=19512879&BRD=2280&PAG=461&dept_id=480247&rfi=6

Dave Rafferty/Herald-Standard
Natasia Reese-Abbott of Point Marion (above) is an honorary ambassador, along with her mother, Crystal Reese, for the March for Babies on Saturday, which begins at the American Legion Post 51 in Uniontown. Reese-Abbott was born prematurely on June 18, 2005, weighing only 1 pound, 5 ounces. Today she weighs 27 pounds and is a lively, happy girl.
Crystal Reese learned about the March of Dimes when her daughter Natasia Reese-Abbott was born prematurely. "I never knew what the March of Dimes was until I had her. They had pamphlets at the hospital and I read one and I decided I wanted to help make a difference,'' said Reese, who, with her daughter, will be honorary ambassadors for the March for Babies that will be held Saturday in Uniontown. It's the second year they've held the position.

The March for Babies, formerly called WalkAmerica, will begin at the American Legion, Post 51 on North Gallatin Avenue. Registration is at 9 a.m. and the 2.6-mile walk begins at 10 a.m. The walk is open to everyone.

Natasia Reese-Abbott is a daughter of Reese and David Abbott Jr. of Lake Lynn in Springhill Township and the granddaughter of Donald and Brenda Reese of Lake Lynn and Anna and the late David Abbot Sr. of Fairchance. She has a brother named David Abbott III.

Abbott works for MTS Trucking in Smithfield and Reese is a stay-at-home mother but has an associate's degree in small business, specializing in cosmetology from Laurel Business Institute and a customer service management certificate from the Career Training Institute.


Reese-Abbott was born prematurely on June 18, 2005, when her mother was 24 weeks pregnant. She weighed 1 pound and 5 ounces.

The baby stayed in the neonatal intensive care unit at Ruby Memorial Hospital, part of West Virginia University Hospitals in Morgantown, for 110 days.

"There were a lot of very sick babies there who were born further along than her and weighed a lot more and some didn't survive. We're very fortunate that she was that small and survived,'' said Reese. "She's our miracle baby.''

When she was three days old, Reese-Abbott had surgery on her heart valve because blood from the heart was going into the lung. She was on a ventilator for about three months and fed through a tube.

"I didn't get to hold her until she was almost 3 months old. That was the hardest thing for me - not holding her and hearing her cry. The ventilator laid on her vocal cords so you couldn't hear her cry,'' said Reese.

The baby then had surgery on her eyes after developing retinopathy of prematurity, an eye disorder that is potentially blinding. Today, her vision is 20-20 but she has a slight loss to her peripheral vision.

She was back on the ventilator after surgery but was discharged in October, weighing 7 pounds.

"They took very, very good care of her,'' said Reese, who smiled and added, "We learned to sit in chairs for long periods of time.''

Since leaving the hospital, Reese-Abbott receives at-home therapy from Fayette County ARC. Today, she weighs 27 pounds and is a lively, happy girl.

"She's very active, always on the go, full of energy,'' said Reese.

And grateful for this, her family turned their attention towards the March of Dimes.

The March of Dimes was created in 1938 in an effort to combat polio. Today, its mission is "to improve the health of babies by preventing birth defects, premature birth and infant mortality,'' according to its Web site. "We carry out this mission through research, community services, education and advocacy to save babies' lives. March of Dime researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects and low birth weight.''

Reese began researching the March of Dimes on-line and was impressed by what she saw and became interested in helping with the annual fundraising walk that is now called the March for Babies, a name change that reflects the community walks every year for all babies.

The family selected a name for their team: Natasia's Angels.

"I considered the March of Dimes and the nurses and doctors at the hospital her angels,'' explained Reese.

They participated in the first walk just before Reese-Abbott's first birthday, raising $200. Last year, the team raised more than $500. They are still raising money for this year's walk.

The team includes Reese's mother and sisters Lisa Coddington and her son, Austin, of Lake Lynn, Stacie Reese of Uniontown and Tracie Reese of Lake Lynn. Abbott's sister Rosanne Abbott of Fairchance also participated the first year.

Extended family and friends also participate, helping with fund-raising activities that included having tag days at Centra Bank in Smithfield, car washes at Advance Auto in Uniontown and bake sales at Shop 'N Save in Fairchance. Bullfeathers B/S Canteena in Haydentown helped the team by selling paper booties in 2007 and 2008, while Foodland supermarket in Point Marion sold them in 2007.

"It's nice,'' said Coddington. "I think it's for a good cause.''

Last year, Reese-Abbott became honorary ambassador for the walk and her picture was put on brochures.

"I was nervous because I had to speak in front of a lot of people. This year, it's getting easier,'' said Reese. "Before when people would ask about her, I would break down and cry.''

Courtney Capra, community director for the Western Pennsylvania chapter of the March of Dimes, said as many as 150 people participate in the Uniontown walk.

She said that many people, such as Reese-Abbott's family, become involved in the March of Dimes because they or someone in their family was born prematurely.

"So many people come up to me and say 'My daughter was premature' or 'I was premature' or 'My niece was premature.' There's a lot of families who come out,'' said Capra. "You don't like to see so many people born premature but it's nice they keep the cause near and dear to their hearts.''

Last year, the Fayette County walk raised $40,000. For more information or to register for the walk, visit online at www.marchofdimes.com.

[Ms. Kathy]

Source Link:http://crm.tmcnet.com/news/2008/04/29/3416550.htm

(BioWorld Today Via Acquire Media NewsEdge) , of Bothell, Wash., presented preclinical data from a study of a blinding eye disease called retinopathy of prematurity (ROP) demonstrating an improvement in retinal abnormalities following treatment with the company's visual cycle modulation compound. The preclinical study was conducted in an animal model for ROP. The animals were given the visual cycle modulator (a derivative of vitamin A) plus a vehicle, or a vehicle alone, and then monitored for 60 days. The drug was shown to be safe, and it demonstrated a significant improvement in retinal blood vessels in the drug-treated group compared with the group that received a vehicle alone. The data were presented at the Association for Research in Vision and Ophthalmology meeting in Fort Lauderdale, Fla.

---

Acucela Presents Preclinical Data from Retinopathy Study Demonstrating Improvement in Retinal Abnormalities
Source Link: www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20080429005503&newsLang=en
BOTHELL, Wash.--(BUSINESS WIRE)--Acucela Inc., a clinical-stage biotechnology company discovering new drug therapies for eye diseases, today presented preclinical data from a study of a blinding eye disease called retinopathy of prematurity (ROP) demonstrating an improvement in retinal abnormalities following treatment with the company’s visual cycle modulation compound. These data were presented today by James D. Akula, Ph.D., Instructor of Ophthalmology at Harvard Medical School at Children’s Hospital Boston at the Association for Research in Vision and Ophthalmology (ARVO) Annual Meeting in Fort Lauderdale, Florida.

The preclinical study was conducted in a well-established animal model for ROP (n=46). The animals were given either the visual cycle modulator (a derivative of vitamin A) plus vehicle, or just vehicle and then monitored for 60 days. The drug was shown to be safe and also demonstrated a significant improvement in retinal blood vessels in the drug-treated group compared with the group who received vehicle alone. Blood vessels tend to abnormally spread throughout the retina in ROP, so an improvement in these retinal abnormalities may present a future option that could complement or even replace the antiangiogenic approaches that are currently being evaluated for use in ROP.

“We are excited about the significant improvement in the blood vasculature that we observed in these studies using our visual cycle modulator. The ability of the compound to slow down the visual cycle is consistent with the encouraging data we have demonstrated in a human clinical trial of age-related macular degeneration,” stated Ryo Kubota, M.D., Ph.D., president and chief executive officer of Acucela. “There are many greatly unmet medical needs in ophthalmology, including retinopathy of prematurity and age-related macular degeneration (AMD). Based on these data, our visual cycle modulators may be able to treat sight-threatening diseases such as retinopathy of prematurity and proliferative diabetic retinopathy. To our knowledge, this is the first evidence to suggest that VCM may be able to treat other retinal diseases that involve neovascularization that are not accompanied by the accumulation of the retinoid-related toxic byproducts, A2E, which is associated with dry AMD or Stargardt disease. We are excited about our compounds for these indications and believe that our orally delivered drugs could provide a much more patient-friendly and safer product profile than the options currently being used for neovascular diseases, many of which are administered by injection.”

About Visual Cycle Modulation and its Impact on Blinding Eye Diseases

Visual cycle modulation may have the ability to impact multiple blinding eye diseases. Acucela is developing an orally available drug that modulates the visual cycle potentially impacting the processes that can lead to blinding eye diseases such as age-related macular degeneration (AMD), diabetic retinopathy, ROP and Stargardt disease. Acucela expects to commence a Phase 1 clinical trial of a non-retinoid visual cycle modulator for AMD later this quarter.

About Retinopathy of Prematurity

ROP is a potentially blinding eye disease that can occur in premature infants and involves abnormal blood vessels growing and spreading throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels may leak, scarring the retina and pulling it out of position, which may cause detachment of the retina. Retinal detachment is the primary cause of visual impairment and blindness in ROP. There are approximately 15,000 annual cases of ROP in the U.S. of which approximately 10 percent are considered severe. There is currently no approved treatment for ROP.

About Acucela

Acucela Inc. is focused on developing new drug therapies for eye diseases, and particularly neurodegenerative retinal diseases such as macular degeneration. The company has proprietary disease-specific assays and technologies to identify and develop compounds that may safely and effectively treat retinal diseases and injuries. The company’s novel approaches have significant therapeutic potential to treat retinal diseases such as Age-related Macular Degeneration (AMD) and Stargardt disease, which affect 50 million people worldwide. The Bothell-based, privately held, biotechnology company was founded in 2002. For more information, please visit www.acucela.com.

Forward-Looking Statement

This press release contains "forward-looking statements" as that term is defined in the Private Securities Litigation Reform Act of 1995. These statements involve risks and uncertainties, which may cause results to differ materially from those set forth in the statements. The forward-looking statements include statements regarding product development. No forward-looking statement can be guaranteed, and actual results may differ materially from those projected. Acucela undertakes no obligation to publicly update any forward-looking statement, whether as a result of new information, future events, or otherwise.

[Ms. Kathy]

New Web Community Brings Together Parents of Visually Impaired Children



NEW YORK, April 29 /PRNewswire-USNewswire/ -- When parents learn their
child has a visual impairment, it can be overwhelming. Parents wonder,
"Will my child fall behind at school?" or "Will my child make friends?" or
"Will my child have a successful career?" With only 93,600 visually
impaired school-aged children in the U.S., over half of whom have
additional disabilities, it's easy for families facing vision loss to feel
alone.



To help these families connect with each other and give busy parents,
grandparents and other caretakers a place to find comprehensive resources
and support 24 hours a day, the American Foundation for the Blind (AFB) and
the National Association for Parents of Children with Visual Impairments
(NAPVI) today launched FamilyConnect(TM), an online, multimedia community
for parents and guardians of children with visual impairments.



Located at www.familyconnect.org, FamilyConnect gives parents access to
message boards where they can talk to other parents, compelling videos
featuring real-life families, parenting articles, a mom-authored blog, a
glossary of more than 30 eye conditions, and links to local resources. The
site also features sections dedicated to multiple disabilities, technology,
education, and every age group from infants to teens.



"We created FamilyConnect to give parents the support and information
they need to ensure their children can achieve their dreams --- whether
that is playing sports or music, learning to read Braille, getting a first
job, surfing the web, making the cheerleading squad, traveling the world,
or going to graduate school," said Carl R. Augusto, President & CEO of AFB.



A recent NAPVI/AFB survey of parents of children with visual
impairments showed that parents/guardians turn most commonly to physicians
(82%), educators (76%), and web sites (65%) for information and support
regarding their children's vision problems. This is consistent with
national statistics from the 2006 Pew Internet & American Life Project that
show 80 percent of American adult Internet users have searched for health
information online. For parents living in rural areas with fewer resources,
the web is particularly important to finding relevant, trustworthy
information and the right services.



"When I talk to parents of visually impaired children they almost
always ask about three things: they want to talk to other parents who have
children with the same eye condition as their child, they want access to
the latest health and education information, and they want to know what the
future holds," said Susan LaVenture, Executive Director of NAPVI.
"FamilyConnect offers parents all these things -- and more -- in one
place."



In addition to joining a community of parents, visitors to
www.familyconnect.org can create a personal profile and receive information
on news and events based on their child's age, eye condition, and location.
Families can also find articles written by parents and professionals on
topics such as:

• Finding the Right Eye Care Professionals for Your Child
• Developmental Milestones: What Do They Mean?
• Your Child's Individualized Educational Program
• Friendship in the Teen Years
  
• College Life Begins
  
  
  
  
  In designing this web site, AFB and NAPVI partnered with leading national organizations and hundreds of local agencies that serve children who are visually impaired to keep FamilyConnect content complete and up to date. AFB and NAPVI also solicited input from families across the country.
  Here are representative samples of what they are saying about the final
  result.
  
  
  
  Jen and Bill O'Neill, Nebraska
  
  Daughter Camille, age 3, Retinopathy of Prematurity (ROP)
  
  "Our family is truly amazed at what we've seen of the site. Wow! Thank you all for the insight to see that this is something that is so needed for families who are facing and overcoming the diagnosis of visual impairment.
  The site is more than I imagined it would be -- it is so comprehensive and
  truly allows families to connect with one another and to resources."
  
  
  
  Patty Bushland, Arkansas
  
  Daughter Mary Rose, age 2, Leber's Congenital Amaurosis (LCA)
  
  "When I found out my baby was visually impaired, I immediately went to
  the Internet to find out everything I could about her condition and what I
  could do to help her. FamilyConnect is so important, and I wish it had been
  there for me when my daughter was first diagnosed."
  
  
  
  The goal of www.familyconnect.org is to provide connections and
  support. By providing accurate information and creating a forum for
  meaningful discussion, families and their visually impaired children will
  feel empowered to reach their full potential.
  
  
  
  FamilyConnect is generously supported by grants from the Lavelle Fund
  for the Blind, Inc. and Conrad N. Hilton Foundation, The Annie E. Casey
  Foundation, and Morgan Stanley.
  
  
  
  About AFB
  
  The American Foundation for the Blind (AFB) (http://www.afb.org) is a national
  nonprofit that expands possibilities for people with vision loss. AFB's
  priorities include broadening access to technology; elevating the quality
  of information and tools for the professionals who serve people with vision
  loss; and promoting independent and healthy living for people with vision
  loss by providing them and their families with relevant and timely
  resources. Headquartered in New York, AFB is proud to house the Helen
  Keller Archives (http://www.afb.org/Section.asp?SectionID=1) and honor the more
  than forty years that Helen Keller worked tirelessly with AFB.
  
  
  
  About NAPVI
  
  The National Association for Parents of Children with Visual
  Impairments (NAPVI) is an international membership organization serving
  families in the U.S. and in 55 countries. NAPVI helps parents to find
  information and resources for their children who are blind or visually
  impaired, including those with additional disabilities. NAPVI provides
  leadership, support, and education to assist parents in helping children
  reach their potential.
  
  
  
  
  
  
  
  
  
  
  SOURCE American Foundation for the Blind
  

[Ms. Kathy]

Birth and death came too soon, but son leaves memory to cherish
Premature infant's battle touches many

By Jeff Cochran | [e-mail] Story updated at 11:48 PM on Saturday, May 3, 2008


Life with Zach was never easy for Kyle and Jessica Kirk, but they miss it.

They miss the daily struggle to scratch every minute from every hour from every day. They miss the battle to keep their emotions in check. They miss the moments when they let their emotions take over.

The couple misses the dark room in the Neonatal Intensive Care Unit at St. Mary's Hospital. Kyle and Jessica miss the machines, and the nurses and doctors who were more likely to give them bad news than good.

They miss never knowing if it was going to be a good day or a bad day.

They miss Zach's wide, blue eyes. They miss his tiny, fragile body. They miss his weak whimpers.

Most of all, they miss their son.

Four months early

A combination of pain, panic and confusion burned the details of Halloween night into Kyle's memory.

"I could tell you the exact minute, what we were wearing, just everything," he said.

His wife, Jessica, was five months pregnant and feeling minor pain and pressure in her abdomen. Dr. Victor Morales, her doctor at St. Mary's Hospital, told Jessica to keep an eye on the pain, but no one was overly concerned.

The pains grew worse as they took their 4-year old daughter, Maddie Grace, trick-or-treating in her elephant costume.


Jessica did her best to ignore the pain. She didn't want to ruin Maddie's good time or to consider the worst-case scenario.

"The contractions kept getting closer. I just thought, 'This can't be happening,' " she said. "I tried to put it out of my head."

When her water broke, Jessica could no longer ignore it.

Kyle raced his wife and daughter to St. Mary's. He did his best to put on a brave face, mostly to keep Maddie calm, but panic and fear raced through his mind.

"But it is four months early," he thought.

By the time they reached the hospital, Jessica was in labor. Worry turned to fear.

"I was scared," she said. "I was scared I was going to lose him."

Family rushed to be there. Jessica's mother, Deborah Brim, made the more than three-hour drive from Tifton to see her daughter and her newest grandchild.

"It was terrifying," Brim said. "We knew he was born, but that was about all we knew. Before we could get in the car, he was there."

An hour and a half after arriving at the hospital, Jessica had an emergency C-section and, at 9:15 p.m., she gave birth to William Zachary Kirk, or Zach for short.

He weighed 1 pound, 6 ounces. He was no bigger than a 20-ounce bottle of soda. Kyle's wedding ring fit snug around his son's thigh.

Jessica and Kyle spent the rest of the night in the hospital with their new son. Kyle's parents took Maddie home at about 11 p.m.

"It was a huge roller coaster that night," Jessica said. "We just wanted everybody to be healthy. We just wanted Zach to be healthy."

Second family

Zach wasn't healthy. No baby born four months premature is healthy.

The Kirks met their son six months ago, and as he grew and fought through the battles that face many preemies, their emotions rose and fell with his progress.

The neonatal intensive care unit at St. Mary's became Zach's first home, where nurses, doctors and a collection of medical machines became his extended family.

"They have pretty much been our second family," Kyle said at the time.

MULTIMEDIA AUDIO SLIDESHOW: Watch an audio slideshow documenting the life and death of Zach Kirk:

View slideshow at www.onlineathens.com/stories/050408/news_2008050400179.shtml

Zach also spent a large part of his young life at the Medical College of Georgia in Augusta, where he flew by helicopter for three surgeries in a four-month span to place a shunt to alleviate fluid pressure on his brain. Zach's third surgery also included treatment for retinopathy of prematurity, or ROP.

ROP is common in preemies, when blood vessels and scar tissue grow over the child's retina.

"It has been a huge battle for him," Jessica said in early April. "We almost lost him a couple of times. It has been such a rough road. You don't want to set yourself up for a fall."

Jessica spent most of her days and nights at St. Mary's. She put her job as the benefits coordinator in the University of Georgia's College of Agricultural and Environmental Sciences on hold. She briefly returned to work, but left again when Zach got sick.

"It has been like a job. I'm here all day," Jessica said. "I've been watching over him, learning how to take care of him."

Several of her colleagues donated their leave to help out.

Kyle, who is Clarke Central High School's baseball coach, would try to visit his son in the morning before teaching his fifth-grade class at Whitehead Elementary School, in the afternoon before a game or practice and again at night.

He questioned whether or not he was neglecting other important parts of his life.

"It comes to the point where you wonder, 'Am I doing the right thing? Am I doing justice to my family?' " he said. "I constantly ask the doctors and nurses 'Do I need to do more?' "

The nurses in the intensive care unit said Kyle had nothing to worry about.

"It is very hard on the parents and the siblings because you've got a baby here that is your heart," said Jennifer Bridges, one of the NICU nurses. "But you also have to have a life outside of this unit when you are going to have a baby in here for months. They have found a way to balance it wonderfully."

Respite relief

Kyle found his outlet on the baseball field. He was able to put his concerns for Zach in the back of his mind and focus on coaching a struggling Gladiators team this spring.

"I don't think a lot of people could do what he did," said Chaz Crumpton, the lone senior on Clarke Central's roster. "I don't think a lot of coaches could do that. He's always did the best he could."

Before Clarke Central's March 10 game against Cedar Shoals High School at UGA's Foley Field, Zach came down with a virus. Kyle didn't see any way he could coach that night.

His wife ordered him to go to the game. The Gladiators won 7-0 and Kyle's players signed a game ball for Zach.

"You get to totally get lost in it for that hour, two hours," Kyle said. "It always creeps back into your mind, but you can get lost in the game. It's been a welcome escape, but it's still hard."

Jessica had her outlet, too. She set up a Web site on carepages.com dedicated to Zach. She would post updates, good or bad, about Zach's condition. The site had more than 700 visitors from across the Southeast.

When a cranial ultrasound showed Zach's brain was bleeding, Jessica used the page to solicit prayer.

"Please pray for us this was a very hard night no parent wants to hear news like this and to be honest I have had almost as much as I can take at this time. Maddie Grace is starting to pick up that something is really wrong so please keep her in your prayers as well," she wrote on Nov. 9.

She also used the site to raise more than $10,000 for the March of Dimes. For the Kirks' friends and family, the site became a part of their normal Internet routine.

"When I got up in the morning, that would be the first place I would go," said Sevelda Crumpton, Chaz Crumpton's mother. "Every night before I would go to bed, that would be the last place I would go. Jessica is one of the strongest people I have ever seen to bare her soul on that care page."

Many of Zach's updates focused on his lung strength. He was born with bronchopulmonary dysplasia, a lung condition that kept him on a ventilator.

Over time, the condition improved and he recovered from his three surgeries. In five months, he grew to nine times his size at birth, and by late March was a healthy 10 pounds.

Like Zach, the chance grew each day that he would leave the NICU, and the family would go home.

Going home

That day is the NICU's form of graduation.

On April 12, the pictures and drawings on Zach's door at St. Mary's came down. His grandparents were there. All the nurses came by to see him one last time. His parents were the happiest and proudest people in the room.

Zach, the rock star of the NICU, was going home.

"It's remarkable," Zach's grandmother, Deborah Brim, said that day, trying unsuccessfully to hold back tears. "Such faith, such confidence through the ups and downs of it. It's been a blessing for the whole family."

Zach's new extended family also was excited about his move home.

"This is a day that all of us are excited about," Bridges said while preparing Zach for his departure. "It'll probably be a little bit tearful. Every day, we come in here and love on him and rock him."

Most preemies stay in the NICU until their original due date. Zach stayed a month and a half longer. When his lungs became strong enough to survive on medical equipment at home, the doctors decided that's where he should be.

"It's pretty overwhelming," Kyle said that day. "You are scared. You are overjoyed. I don't know. I'm having a hard time holding it together. It's probably up there in the top three days of my life. It's pretty awesome."

Kyle and Jessica brought in a buffet of fried chicken, pork, macaroni and cheese and rolls from Weaver D's soul food restaurant to celebrate. Anyone in the NICU was invited to partake.

Even Zach made an appearance at the table, and there was no shortage of nurses to hold him while Jessica and Kyle ate.

Kyle didn't each much, though. He sat silently at the corner of the table, holding his son and staring at him.

He was trying to see the future in his son's blue eyes.

"All this happened for a reason, and we'll find out one day why," Kyle said between bits of macaroni and cheese. "I have my reasons, like any other father. I think something really special is going to happen with this child."

Jessica held Zach to calm him for his first ride home. Getting him to lie calmly in the car seat took as long as lunch.

As Kyle carted Zach's stuff to the car, he started to grasp the responsibility he was bringing home.

"Bringing Maddie home was terrifying," Kyle said. "With this one, you have no clue."

Zach brought with him a laundry list of medications that had to be administered every 12 hours. Organization, Jessica said, is the key. She already had a checklist and spreadsheet ready.

After some tearful good-byes with nurses, the complete Kirk family piled into their black SUV and headed home.

"Ready to get him home and watch him grow," Kyle said.

Later that evening, Zach fell asleep in his father's arms as Kyle watched a movie on the couch. It was the moment Kyle had wanted for 5 1/2 months.

'My moment'

The next morning, Zach stopped breathing.

His parents performed CPR and rushed him back to St. Mary's, but he never was the same smiling, responsive baby that Jessica and Kyle had brought home.

"There was a huge difference," Jessica said. "He was paralyzed from the medication. He was really swollen. It was rough to watch him. ... The anxiety of watching him struggle, we had already started our grieving process."

Dr. Morales told the Kirks that a lung infection had developed into pneumonia, and Zach was not getting enough oxygen to his brain, causing severe brain damage.

The damage was irreparable. He would live with a ventilator the rest of his life.

Kyle and Jessica spent the rest of the week fighting with a parent's worst nightmare and praying for a miracle.

The Clarke Central baseball team held a candlelight vigil outside the hospital April 18. All of the players and many of their parents came to show their support, holding candles covered by red plastic up to the large window on the side of the hospital.

"We all kind of felt like he was a part of us through the whole season," Chaz Crumpton said.

After five days without improvement, the Kirks made the toughest decision of their lives. They knew it wasn't fair to keep Zach alive just because they didn't want to lose him.

On the morning of April 19, Jessica sat with her son in a rocking chair in Zach's dark room in the NICU. Kyle knelt next to his wife and put his hand on Zach and bowed his head in prayer.

One by one, doctors and nurses removed the machines keeping Zach alive. Not long after, William Zachary Kirk took his last breath.

"For me, that was my moment with him," Jessica said. "We knew we were going to lose him. It was a relief to know that he didn't have to struggle and hurt anymore."

Kyle struggled to stay composed, but swept from one emotion to the next the day Zach died.

"You could say it was the worst day of my life," he said. "But then there's a sense of relief. It's just the pain of that entire week, and I knew it was just the machines that were keeping him alive. It was just letting him go and letting him be at peace. It was kind of relieving, but you know, you hurt at the same time. You go through the five stages of grieving in a 10-minute span."

Kyle and Jessica bathed Zach one last time and then wrapped him in a blanket. He was buried in Tifton on April 22.

In Kyle's first game back with Gladiators, Zach was honored with a moment of silence before the game. A small jersey with Zach's name on it was put up on the right-field fence. His initials were spray-painted in foul territory.

The coaches from Salem and Heritage high schools presented Kyle with baseballs signed by both teams and a donation to the March of Dimes.

Similar ceremonies were planned for the remainder of the Gladiators' games.

"It's been the whole region, all the way down to South Georgia and up to North Georgia," Sevelda Crumpton said. "I believe (Zach) has touched thousands and thousands of people."

Life after death

Kyle and Jessica Kirk's house has a room full of baby clothes, toys and infant necessities that Zach never used.

Zach may only have been home a day, he may have never said a word to his mother, father and sister, but he was and always will be a part of the Kirk family.

"I was with him literally every day," Jessica said. "He was my child just the same. Even though we got to take him home for one day, he's still ours."

Kyle will have the image of Zach's big blue eyes staring back at him in his memory forever.

"Once you got to hold him and once his eyes opened up and he looked at you and he smiled at you," he said, "that will be with me the rest of my life. He'll never be forgotten."

Zach strengthened his parents. His trials in the NICU put Zach and Jessica's faith and bond to the test. Ultimately, it was their faith and bond that kept them going through the worst.

When Kyle has a bad day, Jessica toughens up. When Jessica is in tears, Kyle's dry shoulder is waiting. The comfort of knowing they would see Zach again one day was the biggest relief they could have.

"It's our faith in God," Jessica said. "We are both Christians and we are very lucky to have a very supportive church. We know that without our faith, we would not have made it through any of this.

"We know he's better off and we know we'll see him again. It gives us something to look forward to."

Until then, they both live each day with Zach's inspiration.

"We'll be a much closer family," Jessica said "We'll be much more appreciative of what we have. It makes us hold each other a little bit tighter."

Written above Kyle's desk at Whitehead Elementary is a question: Did I do a good job today?

He saw a day-to-day example of how to answer that question in Zach.

Most would think a surviving, living a long life, is the goal, but Zach fought through more in five months than many people do in a lifetime.

"He did a good job every day," he said.


Published in the Athens Banner-Herald on 050408
Source Link:http://www.onlineathens.com/stories/050408/news_2008050400179.shtml

[Ms. Kathy]

Treatment of Retinopathy of Prematurity - Medical Animation:
catalog.nucleusinc.com/generateexhibit.php?ID=22754

[Ms. Kathy]

EYE Facts Sheet for ROP

Some doctors may have this sheet in their offices but here is secure3.aao.org/store/common/index.cfm?mode=kilwwvgz&primary_id=057127&subsystem=ORDwhere they order them.
Retinopathy of Prematurity (ROP) is an eye disease that occurs in a small percentage of premature babies. My preschool class was of all preemies ages three to six with ROP and other complications due to premature birth. A parent may also be able to order this fact sheet and hand them out to teachers and specialists at the child's school. They are published by

American Academy of Ophthalmology
P.O. Box 7424, San Francisco, CA 94120-7424 www.aao.org

I may see if I can order them to use in my situation. Hmmm.