The following is taken from this page titled "Some Frequently Asked Questions" that a parent of a child who is now a full adult named Kelly created in the 2000's. We are trying to determine who this author is and will attribute it to them as soon as we find them. It's been a long time...

Many of the links in this FAQ are invalid today. Anything that is strikethrough has been noted as invalid.

Papa Ponseti & Kelly January 2001

Some Frequently Asked Questions....

1. What causes clubfoot?

The cause is unknown, although genetic and environmental factors may play some role in the development of clubfoot. The term idiopathic congenital clubfoot is the common term for clubfoot in an otherwise normal child. The definition of idiopathic follows: arising spontaneously or from an obscure or unknown cause. The definition of congenital: existing at or dating from birth. Congenital is also defined as: acquired during development in the uterus and not through heredity. Clubfoot develops in a normal foot after 14-16 weeks of pregnancy.

2. How common is clubfoot?

There are differing estimates of the rates of incidence ranging from 1:500 to 1:1,000 births. The March of Dimes statistic is 1:735. Ratio of male to female is 2:1 to 3:1. 40% of cases are reported to be bilateral (both feet). If one child in a family has clubfoot, the chances for a second child having clubfoot are 1 in 35 (2.9%). In identical twins, both children have clubfoot only 32.5% of the time. In non-identical twins, the chances are the same as non-twin siblings that both children will have clubfoot, 2.9%. If one parent has clubfoot, the chances that they will have a child with clubfoot are 3%.

3. What is a heel cord tenotomy?

A tenotomy is a subcutaneous (under the skin) sectioning of the Achilles tendon. As a part of the final casting appointment, a scalpel is used to make a small incision in the back of the ankle under local anesthetic (some doctors use general anesthetic) to lengthen the Achilles tendon. The incision is so small that stitches are not needed. This procedure is intended to complete the correction of the equinus of the foot (allow the toes to lift and the heel to drop). This in-office procedure is needed in approximately 75% of cases treated with the Ponseti method. The final cast is left on for 3 weeks to allow the tendon to heal completely. There are some other types of tenotomies used by other physicians that are more involved than the procedure described here. An open incision heel cord lengthening would need to be done under a general anesthesia where the Achilles tendon is cut in a z-lengthening procedure and stitched back together with extra length. When done, casts need to be worn for about 6 weeks while it heals. The 3rd way the Achilles tendon is lengthened is as a part of a posterior release type procedure. This begins with an open incision Achilles tendon lengthening and then the doctor usually cuts, lengthens up to 5 other ligaments/joints. Then if that isn't sufficient to correct the foot, the doctor can proceed with additional release types of procedures called medial, lateral and plantar releases. These releases involve up to an additional 25-30 things being cut, lengthened, etc. A release type of procedure is what the Ponseti method only needs to do about 2% of the time. The procedures that can be done as a part of a Posterior release or the other types of releases are defined at the Wheeless Textbook of Orthopedics at http://www.medmedia.com/o14/120.htm When a release type of procedure is done, casts need to be worn for about 10-12 weeks to allow for healing. For many doctors, the casts are changed at least once during that period.

4. What is a surgical (posterior medial) release?

With major clubfoot surgery, typically an incision is made circling 1/2 to 2/3 of the foot. Cutting and stitching is done to ligaments and tendons and sometimes pinning of the bones inside the foot. Post-surgical casts are then used from 8 weeks to 12 weeks. These types of surgeries have to be done under a general anesthesia. These are the types of surgery that are done 60-95% of the time after following a more traditional (or Non-Ponseti) method of casting.

5. How many casts does it take to correct clubfoot?

According to Doctor Ponseti, his casting method is 97% successful and takes 1.5-2.5 months of casting (typically 5-7 casts but can be up to 9).

Answer Sources: My intention with this list was to consolidate the common questions that many families who are new to the Ponseti method have asked the veteran Ponseti families. The information here comes from past postings from many different parents and doctors on the on-line parents' support boards that I participate in; a large portion of the information comes from the research conducted by Martin Egbert through his personal research paper (it includes information from many text books) which can be found at the egroups site at: http://groups.yahoo.com/group/nosurgery4clubfoot/f... and through his personal posts to the aforementioned boards. There is also some information from the intro to Doctor Ponseti's book, which he has given permission to be available at the same egroups site link.

There is also information and opinions that I came by on my own. Please use this information only as a personal starting point and discuss everything with your physician.

6. Why is the Ponseti Method of casting different than other casting methods?

Based on what I've read and from my discussions with Doctor Ponseti, the biggest factor in the difference between his casting method and what others implement stems from a profound understanding of the structure of the foot and how it can be manipulated to obtain correction. There is a certain way that the components of the foot need to be moved to obtain the correct positioning. From Doctor Ponseti's intro to his book, Congenital Clubfoot Fundamentals of treatment, here are his guidelines for treatment:

1) All of the components of the clubfoot deformity have to be corrected simultaneously with the exception of the equinus which should be corrected last.

2) The cavus, which results from a pronation of the forefoot in relation to the hindfoot, is corrected as the foot is abducted by supinating the forefoot and thereby placing it in proper alignment with the hindfoot.

3) While the whole foot is held in supination and in flexion, it can be gently and gradually abducted under the talus secured against rotation in the ankle mortice by applying counter-pressure with the thumb against the lateral aspect of the head of the talus.

4) The heel varus and foot supination will correct when the entire foot is fully abducted in maximum external rotation under the talus. The foot should never be everted.

5) Now the equinus can be corrected by dorsiflexing the foot. The tendon Achilles may need to be subcutaneously sectioned to facilitate this correction.

In my own experience, here's what I've seen Dr. Ponseti do: he uses his fingers to feel where all the components of the foot are positioned. He knows how to gently move the foot gradually into a corrected position. He holds the foot at a certain position as it is casted into place. The foot isn't "forced" into a "normal" position at each casting session, as is common with some casting methods. The positions that it is put into look quite odd at first, but each week, when the cast is changed, progress is obvious. The entire key to the method is understanding "how" to move the components of the foot.

7. What is Arthrogryposis?

Arthrogryposis is when more than one joint is contracted, such as the hand, in addition to the clubfoot. Arthrogryposis is generally more difficult to treat than idiopathic congenital clubfoot due to the typical severity and rigidity of the clubfoot. Relapses are more common in cases of arthrogryposis. Here are some links for other sites related to Arthrogryposis that were recommended by another mom:

http://www.groups.yahoo. com/group/avenues (many pictures of children and adults, fabulous listserv community)

http://members.aol. com/amcchat/amcinfo.htm Best everything in one place site. This is site put up by a parent of a teenager with Arthrogryposis. He has links to EVERYTHING.

http://www.sonnet. com/avenues/ Official site of parent run organization, sends out snail mail newsletter quarterly, also has online newsletter. The aforementioned listserv is an outgrowth of this community.

8. Can clubfoot be detected by ultrasound?

Clubfoot can best be detected by ultrasound between 20-24 weeks. Clubfoot can start to develop in a normal foot at 12-14 weeks gestation, but Doctor Ponseti told me that clubfoot often develops after 18 weeks gestation.

9. What is a DBB or FAB?

DBB is an acronym for Denis Browne Bar. What is currently used is similar, but not actually the same as a Denis Browne Bar. The correct term is FAB, which is an acronym for Foot Abduction Brace. It is also known as derotational shoes and splint. It is a brace worn after correction is obtained to prevent relapse. The brace has two open-toed shoes mounted at outward angles on a bar. The bar has an adjustable width, so that the heels of the feet can be spaced at the same distance as the child's shoulder width.

11. How old can a child be and still be successfully treated with the Ponseti Method?

The Ponseti method is 97% successful if begun within a few weeks of birth. For a child at 6 months of age, the chances that it will work without surgery drop to about 60%. For a child changing over to the Ponseti method, the chances depend on the age, severity, and the degree of correction obtained by the prior doctors. Each case should be looked at individually by a physician, because successful treatment has been reported for children 10 months and older as well as some success in children whose feet had started to regress after having a surgical release. As always, the key to success after correction is adhering to wearing the brace as prescribed to prevent relapse. Doctor Ponseti told me that he feels that many cases of relapse could be prevented if the parent had ensured that the child wear the foot abduction brace as he had dictated. 12. What is the debate about x-rays of "corrected" feet? The Ponseti method may result in feet with an internal structure where the bones aren't necessarily exactly lined up the way they're supposed to be, and this is one of the reasons Ponseti's method is resisted by many doctors. But the end result is feet which are functional, flexible, pain-free and aesthetically look like feet should look.

Regarding x-rays of Ponseti method feet, here is a quote from Dr. Ponseti's article for doctors regarding what he calls a common error of doctors regarding x-ray positioning of bones. Dr. Ponseti says, that it is a common error by doctors to make "Attempts to obtain a perfect anatomical correction. It is wrong to assume that early alignment of the displaced skeletal elements results in a normal anatomy and good long term function of the clubfoot. We found no correlation between the radiographic appearance of the foot and long- term function [3]. In severe clubfoot, complete reduction of the extreme medial displacement of the navicular may not be possible by manipulation. The medial tarsal ligaments cannot be stretched sufficiently to properly position the navicular in front of the head of the talus. Since the joint capsules and ligaments play a crucial role in the kinematics of the tarsal joints [7], they cannot be stripped away with impunity. In infants, the medial ligaments should be gradually stretched as much as they will yield rather than cut, regardless of whether a perfect anatomical reduction is obtained or not [11]." "With a partially reduced navicular, the forefoot can be brought into proper alignment with the hindfoot because the ligaments in front of the navicular and the bifurcate ligaments will yield, allowing lateral displacement and lateral angulation of the cuneiforms and of the cuboid with proper positioning of the metatarsals. The calcaneus can be abducted sufficiently to bring the heel into a normal neutral position. This anatomically imperfect correction will provide good functional and cosmetic results for at least four decades, avoiding many of the complications of operative tarsal release. However, in children more than four or five months old, the ligaments become stiffer and they may need to be divided surgically to adequately position the foot." From what Dr. Ponseti has said, there is the possibility of slight mispositioning of the bones, but in their long term studies, x-rays showing any imperfect positioning did not correlate with any long term problem. "In a recent review of [the U of Iowa's Ponseti method] patients treated 25 to 42 years ago [3], it was found that although the treated clubfeet were less supple than the normal foot, there was no significant difference in function or performance compared to a population of a similar age born with normal feet."

Another problem would be that when trying to position the bones precisely with surgery, the doctors would have to cut and lengthen tendons and ligaments that deal with the alignment as well as the operation of the joints and to try to reposition and pin joint surfaces that now do not match each other. Then as the foot grows, the scar tissue inside and around the joints affects the future movement and position of the bones of the foot and joints as well. So although with a surgical method, there may be an immediate proper alignment of the foot, it does not necessarily mean that the bones are going to remain in that proper position. This seems to be supported by the fact that with the Ponseti method, in the event of a relapse, surgery involving the bones such as calcaneal, metatarsal or tibial osteotomies are not needed as a part of any treatment. Even if the x-rays may not be totally perfect, the foot will look and function normally for at least 40 years. Because a few hours without the cast on can allow the foot to start to regress and some of the correction that was just obtained can be lost.

13. Why not remove the cast at home before an appointment?

Because a few hours without the cast on can allow the foot to start to regress and some of the correction that was just obtained can be lost.

14. How frequently are casts changed?

Typically every 5-7 days except for a post tenotomy cast which is left on for 3 weeks to allow the tendon to heal.

15. Where can one go to get more information on clubfoot?

Please see the links page. HomeFAQ Pg1FAQ Pg3FAQ Pg4 16. Are there physicians using the Ponseti Method outside of the United States? Yes, see the Qualified Physicians list on the U of Iowa Virtual Hospital website, or call for physicians who may not be on the list yet.

17. Where can one get a single pair shoes for different sized feet?

Nordstroms department stores will sell a pair shoes of different sizes at no additional cost. You may purchase shoes from Nordstroms on-line as well as at their stores. Some Stride-Rite stores will sell mixed size shoes, check your local store for their policy.

18. Is a skinny calf common with clubfoot?

Yes, it is common for the calf of a clubfoot leg to be less developed than a non-clubfoot leg.

19. How were the guidelines established for DBB/FAB use post-correction? Why not use another device?

The doctors in Iowa experimented with different types of abduction devices for many years while developing this method. They found that the current guideline of 3 months of fulltime wear followed by 2-3 years of night and nap-time wear has had the most success in preventing relapses. In the first 10 or so years of the Ponseti method, the rate of relapsing was higher because they had not yet determined what amount of use of the DBB was needed to help prevent it. About 10-15 years ago, the U of Iowa tried to use AFO's and found that for the Ponseti method, that DBB's worked better to prevent relapses. With the Ponseti method the DBB's are prescribed for both unilateral and bilateral cases of clubfoot.

20. Will clubfoot slow a child's developmental milestones?

No. Clubfoot babies develop at different rates just like non-clubfoot babies. They'll learn to roll, crawl and walk at their own pace, regardless of the casts and braces! 21. What is the importance of checking for hip dysplasia? Checking for hip dysplasia should be routine in all pediatric examinations. In clubfoot it is particularly necessary because hip dysplasia is slightly more common in babies with clubfoot than in those who are otherwise normal.

22. What is the importance of checking for jaundice before leg casts are applied?

Heel pricks are commonly used to check a newborn baby's blood during treatment for jaundice. If a jaundiced baby has casts on both legs, it makes it more difficult to get blood samples. Plaster is used because the cast can be easily molded into the correct form needed to hold the foot in specific positions. Fiberglass, while easier to remove and lighter, is not conducive to molding the foot into position. 23. Why is plaster used instead of fiberglass during casting?

24. How does one contact Angel Flights?

http://www.angelflight.com/

25. How does one contact the Ronald McDonald house?

Iowa City, Iowa RMD House: http://www.angelflight.com/ http://www.rmhc.com/

Nationally: http://www.uihealthcare.com/PatientsV:isitors/Ronal...

29. How does one know if the foot is positioned in the DBB/FAB shoes correctly?

Some parents have punched a hole or a window in the back of the shoe to make sure that the heel is properly seated in the shoe. I have heard that shoes can be ordered with the window in them, though I haven't seen them. Sometimes a line is drawn on the shoe so you can see where the child's toes line up. Make sure you keep possible swelling, curling of the toes, normal growth and thickness of socks in mind if the toes don't meet the line every time. Draw a new line as needed until you don't need it as a reference any more. Background by:Home

26. Are hospital discounts available at the Iowa City hotels?

Yes. Almost all hotels in the area have hospital discounts. Some also have shuttles to the hospital. Make sure you ask for the discount rate when you make reservations. Most of the hotels are actually in Coralville (right next to Iowa City) and are less than a 10 minute drive from the hospital.

27. Where does one find out about things to do in Iowa City?

http://www.iowacity.com/

28. What should one bring when traveling to Iowa City for treatment?

Warm clothes if it is late fall, winter or early spring. A stroller (one may be borrowed from the Ronald McDonald House also). Make arrangements for a carseat if you'll be renting a car. If your child will be getting casts applied, bring small blankets or towels for putting under the casts (see hints section)

30. Can a child move while wearing the DBB/FAB?

Yes, children learn to kick, roll, crawl and pull up to a stand while wearing the brace.

31. What is a plastizode insert?

It is an orthotic foam piece with a sticky backing that is placed in the heel of the shoe to discourage the child's heel from lifting up inside the shoe. It looks similar to an upside-down horseshoe and will be thicker on top. Sometimes a piece of foam is also placed in the tongue of the shoe.

32. What is the normal adjustment period to a cast or DBB/FAB?

There is no answer for this question. Some children have no problems adjusting to casts or braces, others will not tolerate them well at all. A general rule of thumb is the older the child, the more difficult the transition. Some children have a hard time sleeping in a cast or brace, but they should become accustomed to it within one to two weeks.

33. Are there organizations that accept used braces? How does one donate?

Doctor John Herzenberg travels to Central or South America to treat clubfoot children about once per year. He accepts used shoes and braces to help treat these children who cannot afford them. Shoes and bars can be mailed to: John Herzenberg, MD Kernan Hospital 2200 Kernan Drive Baltimore, MD 21207 Tel: 410-448-3394 Doctor Shafique Pirani has developed a clubfoot treatment program in Uganda that has been instrumental in spreading the Ponseti method through most of eastern Africa. Dr. Pirani is from the Royal Children's Hospital in Vancouver. He can be contacted at: Shafique Pirani, MD 205-245 East Columbia Street New Westminster British Columbia Canada V3L 3W4 Tel: (604) 522-2332 Fax: (604) 522-7686

34. What are typical costs for Ponseti Method treatment?

The costs of the Ponseti method in Iowa from start to finish are probably between about $1,000 to maybe as much as $4,000 depending on if both feet are involved, number of casts (4-7) and whether a tenotomy is needed on both feet. The cost for a brace with shoes was $211 (American) as of August, 2000 in Iowa.

35. Insurance advice?

Since there are so many different insurance companies and policies, there isn't an easy way to help everyone with their insurance questions. One thing I can note is that the Ponseti method is not considered "experimental". If you are seeking treatment in Iowa, here is the number for the University of Iowa Hospital's Customer Service office (319) 356-2211, they've been able to help me with all my insurance questions thus far. Dr. Ponseti is also listed as a Preferred Provider for Blue Cross/Blue Shield.

36. How soon should treatment begin after a child is born?

Treatment should begin optimally within the first 10 days of life. Each case needs to be reviewed by a physician, especially for older children who tend to lose the flexibility that a newborn has which may make their feet harder to successfully treat. FAQ Pg 2 FAQ Pg 3 37. How are casts removed? Casts are usually soaked off at the beginning of the appointment in a tub of warm water and vinegar, then cut away with a small blade or scissors when they are soft. Some physicians prefer to use a cast saw. 38. How many hands does it take to cast a baby? It takes a few people to help with the casting of the child. Usually the doctor will hold the foot in position, one assistant or parent will help hold the leg still, and another assistant will wrap the padding and then the plaster on the leg. 39. Do manipulation and casting sessions hurt the child? No. Depending on the child, they may cry because they're irritated with people holding their leg, or they're scared, but some kids don't cry at all. It helps to bring a bottle for the baby to feed during casting sessions to draw their attention away from the casting process, also it may help the baby to relax when the doctor is physically examining the foot/feet. For older children, bring a few toys or give them a small flashlight to help distract them during the process. 40. How long does a child typically wear the DBB/FAB? The brace is typically prescribed for 23 hours/day (one hour for bathing, stretching, playing etc) for 2-3 months and then 2-3 years of 12-14 hours/day. Each case is different, so a physician will determine the amount of time required in the brace at each check-up. In some rare cases, babies with clubfeet will also have loose ligaments. This cannot be diagnosed until the child is 8-10 months old. For these cases, the clubfoot can be overcorrected. The DBB/FAB should be discarded when the child starts to walk.

41. Are there long-term studies on patients treated with the Ponseti Method?

Yes, the Ponseti method has been in use since about 1950 at the University of Iowa. There have been long term results studies done on patients about every ten years since 1963 (1963, 1972,1980, 1993). They have over 40 years of good outcomes as shown in 4 longer-term studies. There are no studies that directly compare surgical corrections versus corrections obtained using the Ponseti method, there are also no studies of the outcomes of surgical treatment methods that extend longer than about 16 years of age. The Ponseti method studies focused on patient satisfaction and painless functional performance of the foot into adult life. As a side note, the longer term studies on the Ponseti method excluded the mild cases of clubfoot that were corrected in four cast changes or less, and only focused on the severe cases. There is not a universally accepted rating system for assessment of results, so comparisons between studies of different methods are difficult. A well corrected clubfoot should look and function as that of a normal person.

42. Is the Ponseti Method really "non-surgical" since tenotomies are often used?

A tenotomy is considered a non-operative procedure by the medical community. Perhaps a better term for the general public would be "less-invasive" surgery as compared to a full surgical release. 43. What is the significance of below the knee versus toe-to-groin casts? In his book, Congenital Clubfoot, Fundamentals of treatment, on pages 70-71, Dr. Ponseti states; "The foot can be maintained in external rotation only if the talus, the ankle and the leg are stabilized by a toe-to-groin (to upper thigh) plaster cast while the knee is in 90-degree flexion. In order to maintain a strong external rotation of the foot under the talus while the talus is firmly immobilized against rotation in the ankle mortise, a toe-to-groin plaster cast is mandatory The talar head will continue to stretch the tight plantar calcaneonavicular ligament as well as just the tibionavicular part of the deltoid ligament, and the posterior tibial tendon just as we stretch them with manipulation. A cast extending to just below the knee cannot immobilize the foot in firm external rotation under the talus. The reason is that since the leg of a baby is round and the anterior crest of the tibia is covered with baby fat the casts cannot be well molded and therefore will rotate inwardly with the foot. As a result, the stretch of the tarsal ligaments and posterior tibial tendon obtained by manipulations is lost and the varus and adduction of the tarsus are left uncorrected. To insist on using short-leg cats in the treatment of clubfeet is to ignore the basic role that the leg and talus rotation have on the kinematics of the subtalar joint, the midfoot and the forefoot. Furthermore, short-leg casts tend to slip off the foot. To prevent this, the orthopaedists often apply the casts too tightly around the calf and the malleoli, causing sores. Below-the-knee casts are not only useless but detrimental."

44. How do I know if my physician is using the Ponseti method correctly?

The Ponseti method relies heavily on an intimate knowledge of the components of the foot, and how to manipulate them in a certain way to obtain correction. It is a method that requires a certain "finesse" and not all physicians easily pick up on how to properly manipulate the foot. Some have called it an "art". Physicians also need to see an adequate number of cases of clubfoot so that they stay well-practiced in this "art" of manipulation. Some physicians try to implement the Ponseti method based on reading textbooks. This may be enough for some doctors to obtain good results, but not others.

The surest way to check your physician is to find out how many casts they typically need to correct a clubfoot and what their success rate of treatment without surgery is. You may also want to ask if they were trained in the method, and who they were trained by. Don't be afraid to do your research on your physician and to ask for references and proof of results. Since the age of the child is significant to the ease of correction, you won't want to potentially waste time if you are not confident in the abilities of your physician.

One of the biggest hurdles that I've seen as a parent bystander is helping families who are falsely lead to believe that their physician was practicing the Ponseti method. The results are commonly not satisfactory because the physician was either improperly applying the method, or only using "parts" of the method adapted to their own procedure. Physicians who claim to be practicing the Ponseti method but are not following the method as prescribed, cause confusion when their success rates are not as high as those who are properly following the method. In normal cases, you should see results within a few casting sessions, and normally no more than 9 casts are needed to obtain correction. Contact the University of Iowa for specific questions about your physician's methods or training.

45. What are the risks of relapse?

With this method of treatment, relapses are mainly related to early discarding of the foot abduction brace. However, even in the most compliant families a relapse can occur. Doctor Ponseti's experience in the past six years indicates that a relapse in a clubfoot that has been well treated is about 5%.

46. Are other genetic problems linked to clubfoot?

Usually, there are no other birth defects for a child born with clubfoot. However, there is an association of higher incidences of clubfoot for children born with some other birth defects, such as spina bifida. For example: the rates of clubfoot are higher in children with spina bifida, conversely, there is not a higher rate of spina bifida in children born with just clubfoot. Those interested in additional research may want to check out the U of Iowa's Virtual Hospital's clinical genetics study guide at http://www.vh.org/Providers/Textbooks/ClinicalGene... It has an overview of patterns of inheritance and also includes a short discussion about multifactorial inheritance as well as where a prior family history does not exist. http://www.vh.org/Providers/Textbooks/ClinicalGene... The site says about these items: Polygenic Multifactorial Inheritance "Many disorders that occur in families are known to have a genetic component but do not follow clear Mendelian patterns of inheritance. These disorders, as discussed in Lesson 1, are referred to as polygenic or multifactorial disorders because they are believed to be caused by the interaction between a variety of genes as well as environmental factors." "Examples of multifactorial disorders include cleft lip and palate, neural tube defects and pyloric stenosis. Individuals who have a first or second degree relative with such a disorder should be referred for counseling, given that their risk of having an affected child is increased above the general population risk. The recurrence risk to sibs or the offspring of an affected individual is approximately 3 to 5%.

The recurrence risk increases, however, when more family members are affected or the parents are related." Figure 2.6 shows a pedigree suggestive of a polygenic or multifactorial pattern of inheritance. http://www.vh.org/Providers/Textbooks/ClinicalGene... Sporadic Cases "In most cases, analysis of a patient's family history will reveal that he or she is the only affected member in the family. However, when dealing with sporadic cases it is not safe to assume that the disease is not genetic. As you know, sporadic disorders can be caused by de novo chromosome abnormalities, new dominant mutations, autosomal recessive genes, uniparental disomy, germline mosaicism or exposure to a teratogenic agent. In such cases, further investigation of the patient's medical and developmental history may reveal clues to the etiology of his or her disease. A history of delayed physical or cognitive development, major or minor malformations or exposure to a known teratogenic agent are all appropriate reasons for referral, especially if the family has questions about why a particular problem occurred."