Today’s special needs highlight is brought to you in honor of July being Cleft lip/palate awareness month.  Our goal with special needs highlights are to provide a fact based look at what parenting a child with a specific special need is like.  Are you considering a child with a cleft lip/palate diagnosis?  Angie Harvey is sharing her experience today.  Thank you so much Angie!!!

What is your child’s special need?

We have adopted two children from China that were born with cleft lip and palate. My son was born with bilateral cleft lip and palate, which means it affects both sides. My daughter was born with unilateral cleft lip and palate which means it affects one side. Cleft lip and palate are birth defects that occur very early in pregnancy. A child can be born with cleft due to a combination of genetics and environmental factors.

What has been easier than you thought?

We were surprised the most with how well our children had adapted to eating and drinking with having an unrepaired palate. Although, this may not be the case with most children, our two children could control their food and liquids without much of it coming out of their mouth and/or nose.

What has been harder than you thought?

The hardest part for us in dealing with cleft has been our children’s speech. Our daughter caught on to English and was speaking and understanding it during our two weeks in China to adopt her. She had her lip and palate repair done in China at 16 months old. We adopted her when she was 19 months old. Our son had his lip repaired in China at 7 months old but didn’t have his palate repaired until we brought him home. He was 2.5 years old during the palate surgery. We believe the progress with his speech has been slower because he was older when his palate was repaired. He can say about 20 words and 5- three word phrases at eight months post op. He understands everything that is said to him and he can communicate with us in different ways to get his needs across. He has been evaluated at our local school district and will start speech therapy once the new school year starts. His doctor told us that it could take one year from the palate surgery for it to be fully healed and for him to be able to learn how to use everything together to make sounds. We are confident that speech therapy will help him reach his full potential.

What has been the biggest challenge?

The biggest challenge for us was our son retaining trust in us while we were going through post op care from his palate repair. This was challenging because during post op we had to use “no nos” which are arm restraints used to keep him from putting his hands or objects in his mouth. He also depended on us to feed him and give him liquids. It felt like we were stripping him from his most basic abilities. He was on a strict liquid/soft food diet and he didn’t understand why he couldn’t have the foods that we were previously providing him. He had to eat things like ice cream, yogurt, pudding, and apple sauce for six weeks.  We were told to give him liquids through a syringe, but when that didn’t work, we had to use an open cup. We had to keep reassuring him that he would eventually get the foods that he wanted and we gave him many breaks from the no nos. We feel like going through this with him helped with bonding and attachment.

What does day to day management of their need look like?

Once their lips and palates were repaired, management of their need turned more social than medical. We still have routine appointments scheduled for their needs, but the majority of the management happens on a family level by working on speech and communication. We work with them daily on helping them communicate clearly and we continuously tell them how beautiful and handsome they are.

When families consider this SN, what specialists should be in their area?

The specialists that are needed for cleft lip and palate are of a wide variety. These specialists include but are not limited to; dental/orthodontics, speech therapy, geneticists, surgeons (plastic surgery, craniofacial), nutritionists, and ENT. Some places have craniofacial clinics where all of these specialists meet with the children at one time.

A lot of things need to be considered when looking to adopt a child with cleft. Having the child’s lip and palate repaired is not the end of care the child will need. There are a wide variety of things that the parents of a child and the child themselves with cleft could have to deal with.

Hearing loss (ranging from minor to severe)

Major speech delays

Bone grafts

Cost of surgeries and therapies

Repeat surgeries because of failed surgeries

Emotional scars

Social and self-esteem issues

Insurance issues

Lots of doctor and therapy appointments

Potential syndromes

Feeding issues

What should they make sure their insurance covers well?

As far as insurance coverage on cleft lips and palates, all policies will vary. In our experience, all of our procedures have been covered under a general medical policy. With the cleft palate specifically, surgeries and medical care are considered medically necessary for the child to receive proper nutrition for development.

Have you had challenging interactions with other people about their special needs?

The only challenging interactions we’ve had about this special need are people staring at our children’s scars. These stares are compounded by the fact that our children are of a different ethnicity than the rest of our family. Most of the stares and questions that we have received are from children. There have been times where children have wanted to make fun of them, but we quickly use the opportunity to educate them. Both of our children are still too young to understand that they have a different appearance as far as their special need. We continuously build their confidence by telling them how beautiful, handsome, and loved they are.

What is the best thing about parenting a child with this need?

The best thing about parenting a child with cleft lip and palate is raising awareness on this special need. Many children are born with cleft lip and palate and while challenges will continue to be present, the more people that understand this need, the more they will realize the management of this need is not unachievable.