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Adopting a Child with a Cleft

Note: This letter is addressed to any parent preparing to—or thinking about—adopting a child born with a cleft. It is written by Sandi Glass, mother to Kevin, adopted from China and born with a cleft lip and palate.

Dear Parent:

As parents considering the adoption of a child born with a cleft, you may have many of the same concerns as birth parents, but also some unique concerns. Several families within the Virginia Smiles community have adopted children born with a cleft. What a wonderful gift they will be to your family! Many concerns parents have stem from the “unknowns” involved with a child born with cleft, whether it’s a birth parent awaiting the birth of their child, or an adoptive parent waiting to travel for their child.

As we were in the process of adopting our child born with a cleft lip and palate, we had many things to learn and navigate, from the mountain of paperwork, to the travel plans, to making a care plan for a child who wasn’t home yet. At times it seemed overwhelming. Now I know it doesn’t need to be! Take it one step at a time and know many of us have already traveled the road before you and are willing to help you along the way.

  1. The first thing that Virginia Smiles recommends for parents, is to RELAX. Parents in Virginia must realize that they are in the best place in the world to have a child born with a cleft lip and palate, because the surgeons and craniofacial teams in Maryland, Virginia, and Washington DC use the most up-to-date methods of cleft repair, and are sought after by people around the world.

  2. Second, the parents must choose a Craniofacial Team of care for their child. A Craniofacial Team is recommended by the Cleft Palate Foundation as the best way to care for a child born with a cleft lip and palate. A Craniofacial Team is an interdisciplinary team of specialists who work together, and with the family, to maintain the child's health care plan. Depending on the child's individual needs, the specialists on a team may include:

    • an audiologist (who assesses hearing);
    • a surgeon (such as a plastic surgeon, an oral/maxillofacial surgeon, a craniofacial surgeon, or a neurosurgeon);
    • a pediatric dentist or other dental specialist (such as a prosthodontist, who makes prosthetic devices for the mouth);
    • an orthodontist (who straightens the teeth and aligns the jaws);
    • a geneticist (who screens patients for craniofacial syndromes and helps parents and adult patients understand the chances of having more children with these conditions);
    • a nurse (who helps with feeding problems and provides ongoing supervision of the child's health);
    • an otolaryngologist (an "ear nose and throat" doctor, or "ENT");
    • a pediatrician (to monitor overall health and development);
    • a psychologist or other mental health specialist (to support the family and assess any adjustment problems);
    • a speech-language pathologist (who assesses not only speech but also feeding problems);
    • and other necessary specialists who treat specific aspects of complex craniofacial anomalies.

    When these specialists work with the family as a team, treatment goals can be individualized for each child, and parents and health care providers can make the best choices for treatment by consulting with each other. Since growth is a significant factor in the ultimate outcome of treatment, it is recommended by the Cleft Palate Foundation that the child be assessed thoroughly and regularly by the Craniofacial Team until young adulthood.

  3. Third, time for the interviews. Since the Craniofacial teams in Maryland, Virginia and Washington DC all have slightly different methods of caring for children born with a cleft lip/palate, Virginia Smiles recommends that parents interview all the teams available in the geographic area, ask questions and find out as much information as possible about each team. For a list of Craniofacial Teams in Virginia and the Washington DC area, CLICK HERE.

    Parents must also remember that Craniofacial Teams that are not in the geographic area will most likely have a Ronald McDonald house, or other type of housing available so that overnight stays can be more comfortable for the family.

    It is imperative that families choose a Craniofacial Team of care for their child very carefully, after considerable thought, research, interviewing, and discussion. Some teams will charge a fee for an interview consultation, others will not. It is best if parents make a list of questions to ask during the interview, and, if possible, bring the child to the interview for the surgeon to see. The Craniofacial Team will care for the child through adulthood, so families must remember that the team of care, as well as the method of repair, will be with the child throughout his or her growing life.

    Children born with a cleft who are adopted generally are older when they have their first surgery. You may have some unique concerns and questions. Here is a list of additional questions you may want to ask the craniofacial teams you interview:

    • How many cleft repair surgeries have you performed on older children?
    • Can more than one procedure be done at a time? (For instance, if your child has an unrepaired lip and palate, can they both be repaired at the same time?)
    • What kind of arm restraints will my child use? (The small ones designed for babies may not fit on an older child.)
    • What will my child’s diet be after surgery and what utensils can he/she use?
    • Can we tour the hospital before the surgery with our child?
    • How soon can they return to school/daycare/gym class?


  4. Feeding. By the time our children are adopted, they have figured out how to eat for the most part. It doesn't mean that it will be neat though! A child with an unrepaired cleft palate will not be able to suck; they just can't create the vacuum needed. Usually the orphanages use regular nipples and cut the hole larger so the milk can just flow into the baby's mouth. Hopefully the orphanage will give you the nipple your baby had been using and you can continue to use that. If not, bring a variety of nipples, including the feeders designed especially for infants born with a cleft (The SpecialNeeds {formerly known as the Haberman} Feeder, the Mead Johnson Cleft Palate Nurser, or the Pigeon Feeder). Each child is different and with the help of the Feeding Specialist on the Craniofacial Team, you can find out which feeder or feeding method works best for your child.

    The bottles made specially for infants born with a cleft are not available in China, so if you can, bring some Mead Johnson Cleft Palate Nursers (or other feeders for infants born with a cleft) to donate to the orphanage and try one on your new child. For those looking for gifts to bring to your child’s orphanage, these feeding devices are life saving for the babies born with cleft. They are available for purchase to take when you travel at http://www.fujiankids.org/assist/cleft.shtml or you may donate cleft bottles through Love Without Boundaries at http://www.lovewithoutboundaries.com/SponsorNutrition.php

    Some children will have been exposed to solid foods, others won’t. Take it slowly and use your parental instincts. When traveling to bring your new child home, remember these few tips:

    • Bring age-appropriate snack food but realize that your child may never have eaten solid food.
    • Baby food is available for purchase in China.
    • You can usually order a baby meal for the flights home – be sure to call the airline a day or two ahead to reserve the special baby meal.
    • Bring small spoons and a plastic bowl. Try feeding your child in the room. Meal time will often be messy.
    • Bring lots of drool bibs and several large plastic bibs that can be easily wiped off after a meal.


  5. The first surgery. Talk with the Surgeon on the Craniofacial Team about when the surgery will be performed and what to expect. Be sure to ask a lot of questions and follow the instructions of the surgeon to the letter in order to help your child recover successfully.

Virginia Smiles reminds parent to enjoy their child, and make the journey of cleft repair memorable by taking lots of pictures, before, during, and after their child’s cleft repair. Don’t be surprised if you find yourself sad as they go into surgery, thinking you will miss their special wide smile. As they recover from surgery, you will see their new smile emerge, and realize that you’ve made it through a milestone together. The first few months can be challenging, but once you are through them you realize that now you just get to live life and enjoy your child.

Virginia Smiles can help families going through these processes by hooking them up with a "buddy", or another family in their area. If you would like to talk with other parents who have adopted children born with a cleft, please send an inquiry to info@virginia-smiles.org.

Sincerely,

Sandi Glass, parent to Kevin, born in China with a cleft lip and palate

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