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1 in 700: Cleft Parents

With the technological and surgical advances today, learning that your child will have a cleft lip, palate, or both, doesn’t have to be as challenging as it once used to be. Cleft lip can be seen on an ultrasound as early as 20 weeks during the full anatomy scan. Cleft palate alone is not as easy to diagnose before birth and is often seen after birth. Once diagnosed by your obstetrician, you are referred to a Maternal Fetal Medicine (MFM) department, which has higher level ultrasounds and specialty doctors, for confirmation of the diagnosis. Once confirmed by MFM, your pregnancy is highly monitored and you are referred to a genetics department where they will recommend more tests including an amniocentesis. Genetics will try and determine where the genetic defect came from. The geneticist will ask a numerous amount of questions of both the mom and dad and make a family tree if necessary. After, the questions and tests, MFM will closely monitor your baby to make sure all other organs and systems are operating normally.

In our case, once referred to the MFM at Winnie Palmer, we waited for the confirmation of cleft by the higher level ultrasound and doctors. Once the geneticist asked all of her questions, we declined further testing as nothing showed in our family history. We stayed positive as the weeks went by. The ultrasound showed all organs and systems working normally and we were thrilled that our son was going to be okay. After his birth, we knew we had to get him through the first eighteen months of his life.

As a cleft parent, the first thing that hits you once the finding is made on the ultrasound is disbelief. “How does this happen?” I remember asking. The doctor simply said, “ We don’t know.” Cleft is usually caused during the first 4 to 8 weeks of pregnancy. It is the failure of facial tissues to fuse together and a gap appears where they should have joined. Of course, scientifically there is more to it than that, but that’s the quickest explanation of what happens. It is speculated that these tissues fail to fuse because of risk factors that include smoking, obesity, diabetes, poor nutrition, or even certain mediations like those used for seizures. Most of the caused cases are unknown. Statistics show that cleft is found in 1 in 700 births.

After all of the ultrasounds and tests, it is very important to get your support system together and do some research for your child’s craniofacial team. It is very important to get the best team as your child may need more than just surgery. Thankfully Ron and I were referred to the best at Arnold Palmer Hospital. Dr. Ruiz, a craniofacial surgeon and dentist, made an appointment with us while D3 was still in utero. He told us what to expect at birth and how to follow up afterwards. We were also informed of the multi-disciplinary team they have for D3’s care including a nurse, dentist, speech pathologist, audiologist, and others. We were delighted D3 would have so much care along the way if needed.

Once our son was born and we got to see his beautiful face, he was taken off to NICU. Dr. Ruiz visited us the same day and went to D3’s bedside in the NICU as well to see exactly what he would have to do in the coming months. Dr. Ruiz also visited the following day to check on our care and D3’s progress with feeding. It is very important to have a doctor that will be hands on and involved with the care of your child as soon as they are born. We knew God aligned our paths with Dr. Ruiz and that his future surgery will go well.

I wrote this for anyone out there to know that once your child has been diagnosed with cleft in utero, or even at birth, you do not have to be alone. There are several resources for you. You do not have to be scared. There are teams of professionals ready and willing to take care of you and your little one all over the nation. Do your research and find the team that works best for you and your family needs. Our son has to have three surgeries so it was very important to have a team that could be with us through each one. D3 has to have surgery for his cleft lip, his nasal encephalocele, and then his cleft palate. The surgeries are in that order and will all be done before he is 18 months. Our physician is able to perform all three surgeries and that was very important to us.

Steps to being a cleft parent:

1) Acceptance

It’s very hard to accept that your child will have a birth defect. A defect of any kind can be devastating. Whether it’s of the heart, the brain, the spine, or in our case, the craniofacial, it is devastating. You immediately start to question how the defect happened and you want answers. When the answers don’t come, you begin to blame yourself. You may also blame anyone, anything, or any situation you were faced with during your pregnancy. Know this: IT IS NOT YOUR FAULT. DO NOT BLAME YOURSELF. IT IS NOT YOUR SPOUSE’S FAULT. IT IS NOT YOUR FAMILY HISTORY’S FAULT. Accept the diagnosis as early as you can so that you will be prepared once the baby is born. Miracles do happen in the womb, however, be prepared for what may come. It’s going to be okay. It may be so much to take in, but know that you were spared. Because having cleft is the least of all birth defects. This defect can be repaired and your child will have a healthy life ahead.

2) Research

Once accepting you will be a cleft mom or dad, look for the best craniofacial team. Usually the hospital where you will give birth will have a team on staff. Look at each doctor’s credentials and ask questions. If all of your questions are not being answered, voice your concerns and if need be, look around. Cleft lip and cleft palate are one of the most common birth defects so there are many doctors that can perform the necessary surgeries.

Websites to browse for more information:

America Cleft Palate-Craniofacial Organization

ASHA – American Speech-Language-Hearing Association

3) Decide on craniofacial team

Meet with doctors and check credentials. Ask questions and get comfortable with the team. Your level of comfort will help you decide which team to go with for each procedure necessary.

4) Make sure to have supportive family and friends all around you.

It is very important for family and friends to be supportive. Any negative energy can put a damper on the journey ahead. The journey is already challenging, why compound it with negative comments or those who are not supportive. The more support you have from family and friends, the easier this journey will be. You have to be in a constant state of positivity. Once you vision the end result in your mind, it only takes steps to get there. Family members play a key role in assisting you on this journey, especially when you are tired or you just need a break. They will be around your child and if they are spewing negative thoughts or energy, that will be felt and have an impact on your child’s recovery. Your child needs love at every stage of the road ahead. And not just a kiss on the forehead, but overwhelming love so that their recovery will be successful and confidence will be instilled at an early age.

5) Pray Daily

At the end of it all, God is in control of the road ahead. You can try to plan, but just as you didn’t plan for your child to have a cleft lip or palate, you cannot plan for the surgeries or the journey ahead. Take the necessary measures to be prepared, but let God take the wheel. Allow Him to be the surgeon, the nurses, at the hospital, and have angels all around guiding your family along. Once you give control to the Maker of All things, the results will be above and beyond what you could have asked for or thought of. For the Word says, He makes ALL things beautiful in His time. Trust His timing. It is never our own, but it is always perfect. Pray for your child’s surgery, pray for each step of the journey, and most of all, pray for your child’s strength and for your strength to see it all through.

We were blessed to birth these cleft angels. We were chosen from 1 in 700. The number 7 means completion. The purpose of your child’s birth will be completed and fulfilled. You are beautiful. Your child is beautiful. The outcome will be beautiful. Just hold on. In Jesus name.

Jeremiah 1:5 "Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."

Monique Diltz

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