You remember that moment when time sort of stands still? When you have the file of a precious one in front of you and you allow yourself to begin to love that child just a little in your heart, and as you open up to the brown of her eyes, or his crooked smile; you also open up to the possibility of “Can we do this?” “Can we handle that special need?”
I remember clearly the evening we saw the first picture of Grace, six months old and spiky black hair with two plastic balls in her grip, spunky to her core. We laughed at the fierce expression on her face and knew she would fit right in. We saw her determined beauty and to our surprise, we didn’t really see the complicated cleft lip and palate glaring like we thought it would. It was there, but it certainly wasn’t what defined her. And although we had placed that need carefully on our long list of what we thought we could handle, we didn’t expect to fall hard for a little girl whose cleft was noticeable and unrepaired. But we did. I remember that evening pouring over the endless surgical possibilities and in typical Jen fashion, expecting the best, yet preparing for the worst. Best case scenario, two surgeries. Worst case, fourteen. Deep breath. If you are like we were, your knowledge of what cleft lip and palate involves is limited to “Operation Smile” commercials. In reality, it is more complex and more diverse in outcome. The complexity and diversity can be quite overwhelming.
If you are in the “deep breath” season, here are some basic tips and personal experience to help as you navigate through. Keep breathing… (This is what I told myself as I pondered the possibility of fourteen surgeries. You may not need to hear it but I sure did.)
1. Carefully limit your time in online cleft lip/palate and craniofacial groups. I dove in for about two days and decided that for me personally, that was all I needed. While very helpful, I found so many differing opinions on the best course of treatment and a tremendous amount of stories on failed surgeries and even failed surgeries on their fourth try. I made the personal decision to only read what I needed to for a specific stage or decision. If I had a question, these groups were a solid place to ask. Otherwise, it was only fear provoking to read about every possible horrible outcome. I used them on a “need to know” basis and my husband instead quickly reviewed them each week to gain a greater knowledge of everything available in the world of cleft lip/palate. It did me no good to worry about these possibilities without having even met our daughter yet. First things first. Even when we returned home, my perusing these groups was purely for specific questions and answers, not for “light” reading or to get pulled into every heart-breaking story. Because I would – it is why I am careful even with the daily news in our world. It can be too much to process.
2. Craniofacial Boards are your friend. Truly, while initially overwhelming, these boards and the amazing people who specialize in them, are modern medicine at it’s finest. As a mother, I appreciate some good solid multi-tasking. These multi-specialty teams of often TEN doctors all get together on a Saturday to make a plan for your baby. They actually compare notes and have conversation and you attend ONE appointment instead of TEN. Beautiful.
3. Know your Craniofacial Team. Before adopting Grace, I can honestly say I had no idea what some of these specialized doctors did. I do now and they are simply amazing. They care for a variety of special needs dealing with anomalies of the face and cleft lip and palate are one of the most common. Here’s a quick run down for you:
• Plastic Surgeon – This doctor will deal primarily with the mouth and nose and likely be the lead doctor for both a lip and palate repair. This doctor can work miracles and will stage surgeries for optimal growth of the mouth, nose and face.
• Oral Maxillofacial Surgeon – This doctor works with teeth, jaw alignment and the spacing of the mouth. In Grace’s initial surgeries, she had an oral maxillofacial team that worked to stretch very tight muscles and skin around her bi-lateral cleft and extend her gum line and existing skin to “house” a new palate. They used words like “obturator,” which sounded like something I didn’t want in my daughter’s mouth and in McGuyver-like magic actually constructed something that worked. I’m still pretty certain it was made with wire and duct tape and I confess we doubted it’s ability but it did the trick. Grace had nothing to work with when we started and after three short months, she had something to stretch and build from in palate construction and lip repair. This is how you rock an obturator.
• Pediatrician – These doctors are the home base for all other care. Ours figured out that Grace’s high fevers had nothing to do with ear infections or other cleft ailments. Urinary tract infections need pediatrician eyes and they are looking for the normal stuff like that along the way.
• Pediatric dentist – Ours is totally laid back and you have to be when you see the x-rays of your little one’s mouth for the first time. It could be in a horror film and you need a dentist who has seen it and is not fazed. Teeth growing in the palate, extra teeth and no teeth at all are the norm and you want one who has the experience to know what can wait and what is a pressing dental need.
• Otalaryngologist/ENT –Ear tubes and ear infections are the norm. Our ENT was our “supplier” for a short season of constant ear drops. He just gave them to us to have on our shelf as needed. You will likely talk with them a lot, especially at the beginning of treatment. Some specialize in the palate surgery and will take the lead there.
• Auditory Specialist – Because the cleft palate anomaly is so closely tied to the ear canal, ears are often affected. To date, Grace has had 3 or 4 intensive hearing tests to track hearing loss and hearing gain after the placement of ear tubes.
• Speech Pathologist –Hands down my favorite people. We see ours twice a week and have one wonderful cleft specialist on our team who knows every little nuance of speech and language issues for cleft children.
• Genetic Counselor –These doctors are looking for other genetic conditions attached to a cleft lip/palate diagnosis. They will normally ask a lot of questions and offer other testing to confirm or reveal other underlying conditions.
• Social Worker – These wonderful people exist on the team to advocate in places where advocacy is needed. They will ask about home, community, school and any areas that could use extra attention or help.
• Medical Photographer – This can be the most fun for your child if they like their picture taken. Normally special backgrounds, lights and poses exist so that the team can track progress and study facial shape and accurately decide a treatment plan.
4. Choose Your Own Adventure – With so many wonderful doctors on your team, it is a blessing to have everyone on the same page. There are treatments that HAVE to happen and others that are optional. You, as the parent, are a vital member of your child’s team. You can help decide the timing of procedures and what is needed. For example, we don’t need the help of a social worker in this season and didn’t want to go through extensive genetic testing. We met with a cardiologist upon returning home from China and knew that her heart was just fine. (Often, the heart is affected in cleft lip/palate kids). We made the decision that it is HER decision later in life to go through extensive genetic testing, so we declined the tests for now as there is no reason to begin looking at what she could genetically carry for offspring at the young age of four. We have slowed down procedures and waited a bit for the purpose of attachment. We have combined procedures so that she didn’t have to experience more surgery than absolutely necessary. Work with your team and listen to their expertise while advocating for your child whom you know best. Worry can push doctors to make decisions they don’t want to make. Fear can push them to respond unnecessarily. It is a team effort made in peace. We have deliberately kept going back to peace in all of the complicated decisions. Some trust in horses, some in chariots, some in craniofacial boards and some in good parental instincts, but we choose to trust the Lord in what He has for her. He’s good and her very best Advocate.
5. Pack for Craniofacial Board Day – Having been a part of two separate hospital teams so far, the board day is rather long in order to see all of those specialists – lasting between two and seven hours depending on the needs. All of the issues that normally trigger for your child will likely come out in buckets, simply from the stress of so many eyes and prodding in one day. We bring plenty of snacks, plenty of art, plenty of books and plenty to drink. We practice beforehand what the doctors may do – I hold her across my lap upside down and ask for the biggest open mouth and “AHHHHHH” possible. She will do that several times that day. Grace likes to talk and have her picture taken so that part is easy but prepare your child so the day is not so scary. And, there is nothing wrong with bribes. If I had to endure that board, I would at least want some Starbucks. Ice cream and a DocMcStuffins figure have worked very well. As the parent, bring all documents that pertain – such as past surgery outcomes, shot records, and speech evaluations. Bring a notebook with your questions and write answers as the day is long and it’s hard to remember. Bring a calendar to plan future appointments and treatments.
6. Consider the Lilies – It is very easy and totally normal to get overwhelmed. We have been a part of two Craniofacial teams – starting with one when we returned home and switching teams (not our rule following/people pleasing style but the best for Grace) just this last year for more specialized treatment. We have had two surgeries that combined a few procedures and have had two rare major complications from them. We are approaching a third surgery in the next six months that will combine lasers for scarring, a “mini” nose job and likely a palate extension. We are currently “practicing” for nasoendoscopy that will occur next week to determine the extent of palate revision. This, again, looks like a horror movie that Grace will experience WIDE AWAKE. I’ve heard it goes well – I would personally cry if it were me!
Grace, like many children with special needs, is more loved and more covered than the lilies that neither toil nor spin. There is a plan for her life and I can rest there. She is more resilient than those flowers that get tossed by wind and more hearty than what the elements can throw at her. She is clothed in a holy kind of way and all of the details are just that. Details. We take them one at a time. There have been a few treatment plans that have changed already. One in particular sounded like the most terrible horror movie plan where her mouth would be sewn shut for two weeks so that the healthy bottom lip could provide for the post complication top lip. Because our girl has a habit of commandeering Bath and Body hand lotion and dousing herself with it – INCLUDING that lip scar – and combined with her penchant for non-stop talking – that lip stretched on it’s own and that horror film surgery is off the table. I could have toiled and spun my way to anxiety but sometimes, the details take care of themselves. We do the next thing and we trust that she is more prized than the lilies that seem to do alright most of the time.
She is doing more than alright. She is a professional. That board is “her people” and she actually enjoys the day now. This is how you rock Craniofacial Board Day.