Friday, February 7, 2014

Palatial Prosthesis & NAM


Walt will undergo about eight surgeries over the course of 15 or so years, starting at 7 weeks. When we met with his surgeon last week, we scheduled his first two surgeries, the first being in March.

That first surgery will be an outpatient procedure that only takes about 30 minutes to put in a Nasoalveolar Molding, or NAM, and palatal prosthesis. We meet with the pediatric orthodontist in a few weeks where they'll make a mold of the roof of his mouth, which will be used to make the prosthetic.

Walt’s cleft is called a complete unilateral cleft lip and palate, meaning that the cleft affects from his soft palate all the way up into his nose. A cleft lip and palate often leave the middle part of the nose and the nasal cartilage deformed, like Walt’s. Surgery alone is often not enough to provide an aesthetically acceptable correction. 

The NAM technique takes advantage of the malleability of immature cartilage of the nose and the ability to non-surgically construct and center the columella (middle part of the nose) through the application of tissue expansion. By the addition of a nasal portion to the molding plate, they can often correct and center the nasal tip, the base on the affected side, as well as the position of the philtrum, (vertical groove in the middle area of the lip) and columella.

This nasal portion is sort of like a wire arm with a ball on the end that extends up into the left side of Walt's nose. It is supposed to stretch his nose, making it easier for the surgeon to create his nostril. 

The NAM has hooks attached to both sides of his open gum line, that will have a small chain attached between the hooks, which will be tightened every other week at the surgeon’s office. The purpose of this is to stretch his gum line and lip tissue, so when he goes back in for his lip and nose repair in May the gap will be much smaller.

My goal with this blog is to keep it updated with Walt's doctor appointments, surgeries and progress. Here's to hoping I can do it!

Tuesday, February 4, 2014

"Well, Since you Asked..."

Those are the words we heard from the technician at our 20 week ultrasound when I asked how much they can really detect from this ultrasound, in terms of defects and conditions.

There was a pang of panic when I heard her, but she gave me no time to run any possible diagnoses through my head, as she quickly moved her wand across my bare belly to find our little babe's face to tell us he had a cleft lip.

I distinctly remember my knee jerk reaction was excitement. How neat that he would match his daddy! Just as quickly as I felt that excitement, it was replaced with fear and sorrow. Since that appointment in September, I have struggled to resurrect that excitement from within me, which is puzzling since a person's knee jerk reaction is what they truly feel, right?

Naturally I had an image in my head of what our baby would look like, and in a way I've needed to lay that to rest; say goodbye to the baby I thought we would have.

It was rough to be positive and optimistic about our child's birth defect, even though I know that with modern technology and the advancements that have been made in medicine, this diagnosis is pretty much the best one you can get in the Defect Department.

The added unknown of whether or not he would have a cleft palate added to much of the stress of my last few months of pregnancy, although I had a pretty good idea that he would. From the first few weeks of finding out I was pregnant I knew something was wrong. Naturally, I played the Worst Case Scenario Game with myself for quite awhile, to the point that I needed a priesthood blessing from Tadd. The blessing put my fears at ease somewhat, but there was always a small nagging feeling in the back of my mind that I couldn't rid myself of.

Call it a mother's intuition if you will, but it hit me not long after our 20 week ultrasound that my nagging feeling was the cleft lip. Something WAS wrong, I had known all along. Now, make no mistake, I felt beyond blessed that our little boy was not facing any health risks. It really put into perspective for me what many mothers and fathers go through in the last months of pregnancy knowing that their little baby would arrive with a chromosomal disorder, or a life threatening condition. My heart just aches for those families, only having felt a fraction of what they've gone through.

Part of me feels ashamed to have been so upset with the knowledge of the cleft lip; how dare I cry over something cosmetic? So many other families deal with much worse in utero and out. Couldn't I just be thrilled that the ultrasounds we've had revealed no health risks whatsoever? Yes, I can, and I was/am thrilled, but I've decided as well to be kind and fair to myself, and recognize that this is important and it does matter to me and my family, therefore I'm allowed to grieve.

I can also acknowledge that a cleft lip and palate is more than just a cosmetic issue. It means handing over my little boy to a surgeon time and time again in his childhood to be put under anesthesia and operated on. It means a lot of pain and hardship for his little body, and potentially challenges in speech and hearing. We are allowed to grieve for a time, as this IS a challenge, and something a parent never wants to put their child through.

Now that our sweet baby is here, with a wider than usual cleft lip and palate, we've had our time of sadness and grief, and now it's time for action. We have a job ahead of us. We've been chosen as this sweetheart's parents to guide him through these challenges in his life, to love and comfort him in times of pain and discomfort. We are to empower him, and teach him he is more than just a cleft and not to become a victim of it. We are responsible for teaching his older brother to protect him and be understanding of the road ahead. And we're feeling ready for this. Bring it.


Moments old


2.5 weeks old

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