Welcome to the Cleft Support blog. This blog was created as a resource and to provide support to parents with a child born with cleft lip and/or palate.

Tuesday, June 28, 2011

A Mother's Guilt

If you’re a mother, chances are you’ve felt your fair share of what I refer to as “Mommy Guilt” from time to time.  Society almost demands that we feel guilty.  We’re expected to work, have successful careers, and be productive members of society while at the same time being the ideal mother.  The unspoken standard is that you should be able to work a full-time job, come home (to your spotless and well-organized house), make a wonderful (and healthy) meal, play with your kids, read them bedtime stories, bake cupcakes for the class party, and wake up feeling and looking refreshed and rested in the morning.  When we’re unable to meet these ridiculous expectations, we feel Mommy Guilt.  If we forget to send a snack for our kid’s preschool party, we scold ourselves and vow to work harder and just generally be better at everything we do, even though we know it’s not always possible.

We’ve all felt that kind of guilt from one time or another, but the guilt I’m talking about is bigger and deeper than that.  This is the guilt that stems from the fact that my child was born with a birth defect, and somehow I’ve always felt that it was my fault.  My son was born with a bilateral (meaning both sides) cleft lip and palate.  This birth defect was not picked up on our 18-week utlrasound, so my husband and I were very shocked when Gavin was born.  My immediate reaction was, “Thank goodness he’s okay.”  This then stemmed into, “Okay, now we need a plan of action to get him the best care that we can find.”  And it finally resulted in, “What did I do to cause this.”  The fact that my child, my sweet infant boy who I already loved more than life itself, would be forced to deal with countless surgeries (the approximation is somewhere around 18 – 20), doctor’s visits, and speech therapy sessions was overwhelming, and all I could think was that, somehow, this was my fault.

Gavin shortly after birth

From that point on, I was on a mission.  Not only would I make sure that my son got the best care, had the best surgeons, and would see every specialist that he needed to see, but everything else in his life was going to be perfect, and I was going to be the perfect mom.  He would never lack anything: fun, toys, attention, love.  He would have it all, even if it killed me.  I would spend the rest of my life making sure he had everything he ever dreamed of in order to make up for all the pain and discomfort he would have to go through.  That was the extent of my guilt, but it actually got worse.  A lot worse.

Gavin after his first surgery

What I fondly refer to as “guilt gift buying” began with his very first surgery.  Here was my four-month-old son, getting ready to undergo a four-hour surgery, and I felt terrible.  He was such a happy baby, and I hated to think of the pain he was about to endure.  I was scared – scared as hell.  What if something went wrong?  What if he reacted poorly to the anesthesia?  What if something happened?  So, to make myself feel a little better, I bought him some new, elaborate toy.  There, that will make you happyA new toy. The good news is that Gavin did incredibly well with his first surgery; nothing went wrong, and he was back to his normal, happy self shortly after.  But, that didn’t make me feel any better because I knew we still had a long road ahead of us.

Gavin after his second surgery

Fast-forward to four surgeries later.  They were all trying, heart-breaking, nerve-racking, and exhausting.  But, we survived.  Somehow, we survived.  The guilt, however, never went away.  I tried to do everything and be everything for my son.  I made homemade lunches for him every night.  I refused to send a peanut butter and jelly sandwich, opting to send things like stir-fry instead.  I made sure that he was read to every night.  I made elaborate birthday cakes that took me hours and hours to decorate.  I bought him everything his little heart ever desired.  And, I worked.  I worked and I worked and I worked.  I worked to make more and more money so I could buy him more and more things and take him on countless adventures – all to make up for my guilt.  I worked so much, and focused so much on making money, keeping my house clean, cooking the perfect dinner, that I became someone I didn’t even like.  I barely got to spend time with my family, I was crying over things like over-cooking a slab of prime rib or forgetting valentines for his daycare, and I was stressed to the point where it was starting to affect my health.  To add to that, I wasn’t enjoying life, and I definitely was not a pleasure to be around.

Gavin at age 2

It was at this point that life gave me a much needed wake-up call.  Something personal happened that made me stop in my tracks.  I asked myself, “Is this really the person I am?  Is this the person I want to be?  Is this the life that I want for myself?  Is this the role model I want to be for my son?”  The overwhelming answer to all of those questions was “NO!”  After a few months of some very intense self-reflection and self-evaluation, a few things occurred to me:

1.  Maybe there was something I did or didn’t do during my pregnancy that led to Gavin’s cleft, but I did the best I could.  How could I have known?

2.  What happened, happened.  I cannot go back in time and “fix” this, and no amount of gifts or cupcakes is going to change what happened.

3.  Despite all he’s had to go through, my kid is happy.  He’s a happy, outgoing, well-adjusted child.  He’s handled all of this far better than I have.  So, if he’s happy, I should be able to let go of some of that guilt.

4.  The person I became was not the person I wanted to be, and I was not the mom I wanted to be.  Did I really want my child to grow up thinking that nothing’s worth doing if it’s not perfect, or that if he isn’t perfect people won’t love him?

5.  I should have accepted the counseling that was offered to me after he was born.  I shouldn’t have tried to tell myself that I could handle this surprising news all by myself.  I’m now finally able to start working through all of the guilt I’ve harbored for well over three years.

6.  Life doesn’t always give us what we want, but it always gives us what we need.  Despite all that he will have to endure, I was given Gavin (and he was the born the way he was) because the challenge of the birth defect will make us both better people.  And, I needed that.

7.  I’m not perfect.  Perfect is an unattainable goal.  But, people will still love me even if I’m not perfect.  I’m doing the best that I can, and that’s all anyone can ever really do.

So, the next time you’re overcome with Mommy Guilt, take a few deep breaths, remind yourself that you’re doing the best you can, and we’re all in this together.

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Thursday, June 16, 2011

Cleft Clinic 2011

Today was Gavin's second annual visit to the Cleft Clinic. If you've never experienced a cleft clinic before, it's quite overwhelming. Not only does your child see many specialists in a short amount of time, but it's your job to navigate through all of the specialists to make sure that you visit with each one. Generally speaking, there is usually a speech therapist, an audiologist, an ENT (ear, nose, and throat doctor), a pediatrician, a psychologist, a social worker, a nutritionist, and a team of doctors that includes a dentist, an orthodontist, an orthopedic surgeon, and a plastic surgeon.

We were scheduled to arrive at 9:15 a.m. After checking in, we waited for almost a half an hour before we were allowed to begin making our way through all of these specialists. First, Gavin was weighed and his height was measured. Then, we met with the nurse who oversees all of the details and patients in the cleft clinic (she's also the nurse who works at our surgeon's office). The nurse asked general questions about Gavin's health and if there were any concerns we wanted addressed at the clinic. At this time, we're not really concerned with Gavin's development or progress. After meeting the nurse, we were off to the audiologist. Since Gavin just had a hearing test two days ago, we decided to skip doing another one. We briefly discussed what had occurred at our ENT's office on Monday, and then she sent us on our way.

Next we headed to the speech therapist. Gavin wasn't particularly cooperative, but she was able to listen to him say quite a few things. Gavin's speech, surprisingly, has never been delayed. In fact, our previous speech therapist (who had been visiting Gavin four times a year) actually discharged us because his speech was advanced. This speech therapist said that his speech sounded good - not too much air coming through when he speaks - and he was on-track for his age. Our only issue is that Gavin sometimes stutters, but when I explained the stuttering to her, she said it was probably just developmental and something he would outgrow. Following speech, we went to see the pediatrician. He basically just checked Gavin over, again reminded me that he would be taller than me by the time he was 13, and sent us on our way - no concerns here either. I decided that, since Gavin was just seen by an ENT on Monday, we would skip that specialist today.

We headed over to nutrition, where she also had nothing really to tell us. Gavin's a pretty good eater, he eats a variety of foods, and when he's hungry, he eats! We then moved on to see the psychologist and social worker who both agreed that Gavin was a happy, well-adjusted, normal three-year-old who didn't really feel like listening or following directions at that point in time. Somehow, he still earned a "prize" from them. Our final visit was with the team of doctors.

Our surgeon took a few pictures of Gavin, took a quick look in his mouth, and then invited every doctor in the room to take a peak at Gavin's mouth (poor Gavin was a little terrified but survived). The dentist wants us to get him started on fluoride tablets (we have well water) soon so that the adult teeth he does have will be nice and healthy. The surgeon told us that unless the speech therapist had any concerns with Gavin, we would see him back in a year.

Because Gavin is only 3, we're kind of in a holding pattern with surgeries. There is a lot of work left to be done regarding his upper gumline and teeth, but that work won't begin until he's a few years older and his adult teeth start coming in. So, it looks like we get at least another year-long break without having to worry about surgery!

Ear Tubes, Tonsils, Sleep Studies, Oh My!

Today was Gavin's bi-annual ENT appointment.  To recap, Gavin had his first set of ear tubes put in when he was 4 months old.  He's had his left tube replaced twice, and his right tube replaced once.  The idea behind ear tubes is that they help to drain fluid that gets caught in the middle ear (a common problem for many children, especially those with clefts) which can cause hearing loss.  We were referred to an ENT when Gavin was 3 months old, due to the fact that he had already had quite a few ear infections and because of the severity of his cleft.

On top of getting his tubes checked out (to see if they're still in place), we also had to discuss the results of a sleep study that was done at the end of April.  Gavin's surgeon ordered a sleep study because, initially, he had many problems sleeping after his last surgery.  For quite awhile, I felt as if I still had a newborn.  Gavin would wake up many times during the night.  He usually ended up in bed with me, and then his sleep was restless, and he snored quite a bit.  However, in the past few months, his sleep has improved.  However, our surgeon said that he orders a sleep study at some point on all of his patients who have had a palate repair, so we figured why not do it now?

The results came back that Gavin has Borderline Obstructive Sleep Apnea due to enlarged tonsils and adenoids, and the sleep technician wanted us to see our ENT about possibly having Gavin's tonsils and adenoids removed.  We weren't really keen on this idea since, one, his sleep was improving, and, two, we really didn't want Gavin to have to undergo yet another procedure.  But, we scheduled an appointment with the ENT to see what he recommended.

After the ENT checked Gavin's tonsils and adenoids, he agreed with our position of doing nothing about them right now.  He said they weren't overly enlarged, and if his sleep is improving, why bother with another procedure.  Gavin's left ear tube was still nicely in place, but his right tube had finally come out.  The ENT wanted to take a look at the right ear, so we went to another room where he actually removed the tube that had fallen out.  Well, it hadn't exactly "fallen out," but had gone further into his ear canal.  Upon removing the old tube, the ENT discovered that Gavin had a small hole in his right eardrum, which can sometimes happen with ear tubes.  He was not overly concerned about the hole, but asked us to stick around and do a hearing test.

Gavin did really well with the hearing test, and his hearing is within normal range - which is great considering he has a hole in his eardrum.  The ENT explained that, right now, the hole is actually acting like an ear tube - helping drain any liquid that could be caught in his inner ear.  As of this time, he is not going to replace the right tube since the whole is doing its job.  However, the hole could close up, and if liquid begins to become trapped again, we'll have to replace the tube because the liquid can cause hearing loss.  The only thing we really need to worry about regarding the hole is Gavin getting water in his ear.  He will have to wear earplugs and a special headband to hold them in when he swims.

This week is a busy week; we go to the dentist tomorrow and the cleft clinic on Wednesday!

My Story

One week after my due date, I went to the hospital to be induced.  Eight hours later, an emergency c-section was performed, and my son, Gavin, was born.  Unbeknownst to me, my husband, or any of the medical staff, Gavin had a bilateral complete cleft lip and palate.  It was not detected on his 18-week ultrasound, so we were not prepared.

This is what Gavin looked like at birth:

Due to the severity of his cleft, Gavin could not breast or bottle feed.  The hospital we were staying at was very small and did not have a NICU where he could be tube-fed.  Gavin had to be transferred to a large children’s hospital over an hour away, while I was required to stay where I was for 36 hours after the c-section.

The first thing that happened after Gavin was transferred to the NICU at the children’s hospital was that a nurse from their oral cleft team came to visit.  The surgeon also consulted with my husband and mother-in-law and answered any questions.  He also gave them a brief overview of the severity of Gavin’s cleft lip and palate and what it might entail in the future.

Gavin had to be tube-fed for the first few days of his life.  Before we could take him home, we had to learn how to intubate him (put the tube in) and how to properly tube feed him so that he didn’t get too much air in his stomach.  The nurses also gave us a Haberman bottle (now called the Medela Special Needs Feeder) and showed us how to feed Gavin with it.  We quickly adapted to using the Haberman, but many friends and relatives weren’t comfortable with it, so we did the majority of the feedings ourselves.
Haberman (Medela Special Needs Feeder):

When we brought Gavin home, five days after he was born, we kept his feeding tube in but tried to get him to eat out of the bottle as much as possible.  In fact, he did so well that we only left the feeding tube in for a few hours, and then we were able to exclusively bottle-feed him after that.

A nurse from Visiting Nurses came out weekly to make sure Gavin was gaining weight, which was the only major concern at the time.

Over the next few months, there were many doctors’ visits – pediatrician, ENT, surgical consultations, etc., - but we survived it all!

Gavin had his first surgery when he was four months old.  His first surgery consisted of them closing part of the tissue under his nose and closing one of the gaps in his upper gum line.  The surgeon hoped that bone would form between the two parts of his gum line, but that didn’t happen.  They also had to remove a few small teeth that were already coming in.

Gavin after his 1st surgery:

The first surgery was the most difficult emotionally because we didn’t know what to expect.  It took about 3 ½ hours to complete, and seeing our baby’s face change drastically was a little bit of a shock.  Regardless, he did very well and came home a happy baby.

Gavin had his second surgery at 9 months.  In this surgery, they closed a small part of his palate (in the front of the roof of his mouth) and closed the gap under his nose on the other side.  They did not do anything with his lip until much later.  Before this surgery, due to the fact that the surgeon planned to do a bit of palate repair, Gavin had to be completed weaned off of the bottle.  We started about 2 months prior to this, introducing a sippy cup with a soft flange (the part you drink out of), and slowly using his bottle less and less.  So, by about 8 ½ months, Gavin no longer drank out of a bottle.

Gavin after his 2nd surgery:

Gavin had his third surgery about 8 months after his second, when he was about 15 months old.  In his third surgery, they repaired most of his palate.  Mentally and physically, this was the toughest surgery by far.  Gavin could not eat solid foods for 6 – 8 weeks, and then we had to slowly introduce soft solids back into his diet.  He barely ate for days after his surgery, which concerned us.  We later found out that this was completely normal.  Gavin had always been a good eater, so he would become very upset if we ate anything in front of him that he couldn’t have.  For those 8 weeks, we had to eat when he wasn’t watching, which was difficult since I was off of work and home alone with him all day.  Very little about his physical appearance changed after this surgery.

Gavin after his 3rd surgery:

Gavin’s fourth surgery took place 4 months later, when he was about 19 months old.  In this surgery, the surgeon focused mainly on his lip repair.  The restrictions to his diet weren’t as drastic this time, but it took him awhile to become accustomed to his new lip.  He could finally learn to do things like drink out of a straw, which was exciting.  His upper lip was quite tough after the surgery, and we had to physically massage the area.

Gavin after his 4th surgery:

Gavin is now just over three years old, and we haven’t had any more surgeries.  We are hoping not to have any until he is at least 5, depending on what the surgeon says.  He has mentioned doing some work to Gavin’s nose before he starts kindergarten.

Gavin at age 3:

Due to the severity of his cleft lip and palate, Gavin will require many more surgeries before he is an adult.  Despite that, Gavin has not had many other issues relating to his cleft – no hearing loss, no speech delay, etc.  In fact, he is an extremely happy, loving, and social child.