Conall's Cleft Lip and Palate

Conall, our youngest son, was born October 31, 2002 with a wide unilateral cleft lip and palate. Conall weighed 10lbs, 10oz! Not such a little guy! Over his lifetime, he will have several procedures and surgeries to bring the separated parts of his mouth together. We're using the blog as a place to share our experience with others who are seeking information and, perhaps, some reassurance.

June 13, 2012

Palate Expaaaaander

The quad helix has done its work.  Dr Cohen, the orthodontist, says Conall's mouth is likely ready for his bone graft surgery.  He will consult with Conall's plastic surgeon in Toronto and we'll be hearing soon.  All indications are that Conall will have his surgery in the fall.  Dr. Fisher will remove some bone from Conall's hip and graft it into the space where his cleft is.  My denial that Conall will have this surgery is getting less and less easy to keep up...

3 months before

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March 02, 2012

Transformers - Quad Helix

Conall had his palate expander inserted today by his orthodontist Dr. Cohen. Called a QUAD HELIX - (maybe the next character on Transformers?) similar to a retainer, but this one will be cemented in.   Also known as a "palate expander", its purpose is to create a space in Conall's mouth to prepare for his bone graft (more on that later).  First they took photos and made a mold of his mouth in order to create a custom quad helix.  Then it was inserted a few weeks later.  The procedure was real simple and didn't bother Conall but his mouth was pretty sore by the end of the day, as he could already feel it working.  He'll go back regularly to have the device reactivated until the work is done.

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February 23, 2012

Tooth Has to Come Out :(

Conall had a tooth pulled today.  A bottom baby-tooth was taking too long to come out and will end up banging up against the palate expander up top (coming soon), so it came out.  Dr. Krusky is such an amazing pediatric dentist that Conall was relaxed the entire time and didn't feel a thing.  It feels a bit tender now and he's only eating soft food, but otherwise he's feeling OK.  Still, no fun.

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September 30, 2011

We've Done This Before (another round of tubes)

Conall went in to hospital today for another tube insertion.  He had been complaining of pain and difficulty hearing and we learned he had another impacted tube.  There was a concern of damage to his eardrum, so we got in quickly.  Conall was a real trooper (as always).  This time around was a bit more scary for him since he could recall the pain and discomfort of the last time.  He also had trouble keeping anything he drank down after, so we had to stay really late to be sure he was OK.  No matter how simple the surgery, I always feel so bad for him... tough on mom too.


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July 07, 2011

Trip to Orthodontist

Conall sees his orthodontist today to get some photos taken to start thinking about work that will need to be done before he has bone-graft surgery (more on that later)

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October 21, 2009

Hearing test - all systems go!

Conall had a hearing test at the Alberta Children's Hospital today.  This is a routine test to ensure that the tubes in his ears are working and that he can hear properly.  Conall sits in one room and the technician in another with a window.  He is fitted with some sort of hearing device and follows directions to indicate sound or to repeat words.  Conall came through with flying colours - he actually enjoys the "hearing games" as he calls them.

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August 04, 2009

Why do you have a scar?

We were visiting some friends on their houseboat this weekend when I overheard their daughter ask Conall "Why do you have a scar?"

It took a lot of effort not to answer the question for him, but I managed. Turns out 6 year old Conall doesn't need my help - he did just fine on his own. He simply explained that he was born with a cleft lip and palate and that the scar is a result of one of his surgeries. I felt a mixture of joy and loss. The joy is for him being so matter-of-fact and mature. The loss was for me... that my role of the educator and protector may be coming to an end. It also got me thinking about how this is a relatively rare question from his peers and that some may not be as kind as our friend's daughter. One day at a time...

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November 01, 2008

Another Round of Ear Tubes

Once again, Conall is as brave as can be during a hospital procedure. After waiting almost 6 months to get a new set of ear tubes, Conall's surgery date finally arrived on October 27th.

Conall has had more sets of ear tubes than I've been able to keep count. Children born with cleft palates almost always have ear passages that don't drain properly. As a result, they can experience more than their fair share of ear infections and other complications. We've been pretty lucky so far with tubes falling out without much ado but this time was a bit different. Conall had been complaining about ear pain and our cleft team in Toronto suggested some tests. It turned out Conall was experiencing some hearing loss in one ear from a tube that had tried (unsuccessfully) to make its way out of his ear canal. His pain was related to noise and it is quite difficult to keep the noise down for a 5 year old in a grade 1 class though the day and two brothers the rest of the time! It was a tough 6 months waiting for the surgery, but he came through with flying colors!

Here is Conall at the Alberta Children's Hospital being prepared for the short surgery.

He thinks he's in heaven when they give him his "own" DVD player to watch while he waits to go in to surgery.

When they do call him down, Conall skips to the operating room - the hospital staff are always surprised at how relaxed Conall is, but I expect it now; we have worked very hard over the years to make his hospital experiences positive. I asked the anesthetist if I could come in for Conall's induction and he gave me the "OK". It is always up to them but I haven't been turned down yet! It is difficult to watch him as the gas begins to take affect - he struggles against it, but soon enough his is asleep and I can make my way back to the waiting room.

Here is Conall and his popsicle right after the surgery - it went really well and Dr. Drummond expects the pain will have gone away for Conall. We will follow up in 5 weeks with him.

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March 30, 2008

The great thing about the periods between surgeries is that you can pretend, for a while, that your child doesn't have anything out of the ordinary to deal with. Conall is 5 years old right now and that means we have 5-7 years to go before his bone graft where bone is taken from his hip and transplanted to the roof of his mouth. Luckily, Conall doesn't have any speech problems, so the only time I have to confront the reality of his cleft is the yearly trip to meet the cleft team. We're booked in a few weeks. All the emotions are rushing back and I'm starting to feel badly for Conall (and myself).
Here is a recent picture of Conall on the beach in Dominican Republic. He is so beautiful and joyful! I'm so glad he's part of my life. Even if it means feeling sorry every once in a while, I wouldn't change a thing.

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January 08, 2007

The Beginning of Conall's Journey

Conall's cleft was noticed in a routine ultrasound at 22 weeks. We were told he had a unilateral (one side) cleft lip and possibly palate. Conall kept his cleft palate a secret up until his birthday!

Conall's ultrasound

Conall shortly after birth

Below is an Excerpt from our "birth plan" for Conall:

"It is very important that the baby’s cleft is not the center of the birth. We are not suggesting it is ignored, because we are very interested in seeing it – just that it not be made to be more than it is (assuming baby is healthy in every other way)."
Conall comes home 5 hours after he is born. He meets his brothers for the first time - they waited up for him!

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January 07, 2007

Feeding Conall

Feeding a baby born with a cleft can be a real challenge. Breastfeeding is usually not possible since baby lacks the mechanism required to suck. Conall drank expressed breastmilk exclusively for most of his first year. We fed him with special bottles designed for babies with cleft.

Conall's first food was breastmilk. Patti expressed colustrum for a few days before Conall was born and fed it to him using a Haberman feeder.

The Haberman feeder is specially designed to allow a baby to "bite" on the nipple to recieve milk. Later we switched to a pigeon bottle (similar concept but smaller nipple)

Not An Easy Task...
Expressing breastmilk for Conall was one of the most difficult things I have ever done. It required serious dedication and determination. Feeding Conall was like feeding twins; first I would have to pump (baby 1) and then I would feed Conall (baby 2). It was never easy, but it was worth it.

After palate surgery, Conall was able to suck and could use a regular bottle/nipple.

I am grateful for the support of the following groups/people:

Finally, here's the letter I wrote when I stopped pumping milk.

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The End of Pumping Milk for Conall

Thank you for indulging me, I've been dreaming of the day I would post a message saying I was "hanging up the horns" and here it is...

Today I am pumping the last drops of milk and bidding adieu to one of the most incredible and most difficult things I have ever done in my life. My son was born with a cleft lip and palate and I decided he would receive breastmilk exclusively for a year which would see him through two surgeries. I pumped for 11 months and have enough frozen to see him through his 12th month.

I have one bit of advice for those of you just beginning to pump - EXPECT IT TO BE DIFFICULT. I know that doesn't sound fun, but it is the only way to stay sane. If you expect it to be simple and problem-free, you will quit when it gets rough. It is certainly easier at 11 months than 2 months, but there are different problems as you do it longer (e.g. supply).

I've pumped every 2 hours for my son when he was small, I've pumped in moving cars & planes, airports, and hospitals. I've shed many tears over painful nipples, low supply, lack of sleep, and emotional exhaustion. I've taken medication to increase supply. I've pumped with 3 children under the age of 5 and with my husband away on business trips. I've had plugged ducts and thrush. And through it all I've had to deal with countless doctors' appointments and medical treatments for my son's cleft palate.

What an accomplishment! I feel so proud of what I've done. Rest assured you will make it to your goals. If I can do it, you sure can!

So, I finally have come to an end I never believed I'd see. I can stop saying "Mommy can't, because she has to pump" or "I have to get home so I can pump". I can return this rental pump (I wish I could run it over with my car) and celebrate. What, you ask, will I do to celebrate? GO TO BED EARLY for the first time in almost a year!

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January 06, 2007

Conall's First 4 Months

This provides a synopsis of Conall's first 4 months.

Conall's cleft was treated with a Nasal Alveolar Molding device (NAM) for the months before surgery. Each week for 4 months, we traveled 4 hours by car from Ottawa to The Hospital For Sick Children (Sick Kids) in Toronto for Conall's care.

November 13, 2002 - Sick Kids Toronto. Conall's orthodontist, Dr. Bruno Vendittelli, took an impression of Conall's mouth in order to fit him with a plate which would begin the process of bringing the parts of his lip/palate together. This relatively new technique was started at NYU Medical Center; Dr. Vendittelli studied with the team there. We headed back to Toronto November 20th to have the plate inserted. We would return to Toronto every 2 weeks to have the plate re-fitted.

November 14, 2002 - Sick Kids Toronto. Dr. David Fisher, Conall's plastic surgeon, met us for the first time. He expected Conall to wear his mouth plate for approximately 4 months before he would be ready for his first surgery (lip repair).

November 20, 2002 - Sick Kids Toronto. Conall's orthodontist fit his new plate into his mouth. Conall slept through the entire fitting and only woke when he got hungry near the end. The plate is held in place by elastics and tape on his cheeks. These tapes also provided the resistance to create movement in his mouth. Dr. Vendittelli expected to create a 4mm space where there was currently 10mm.

Conall back at home after getting his new mouth plate. He doesn't like the feeling and has been fussing quite a bit - his doctor expects this to only last a few days to a week at which point Conall should be quite used to it.

November 27, 2002 - Sick Kids Toronto. The plate is working well! Dr. Vendittelli was amazed at the results of only one week. Conall was still obviously uncomfortable.

December 18 , 2002 - Sick Kids Toronto. Dr. Vendittelli added a nasal extension to Conall's mouth plate. The intent was to shape Conall's nose at the same time as the palate. Once again, Conall took everything in stride. He was uncomfortable for a few hours and then seemed not to notice. Conall's surgery date (for the lip closure) was discussed for late February.

Conall with his new nose ring.

Here are close-ups of the device.

When Conall was born, his cleft measured approximately 10mm

After 5 weeks of wearing his mouth plate & tapes, his gums were almost touching

Conall kept knocking his plate out of his mouth so he wore restraints some of the day. We couldn't afford to lose the progress he'd made. These are the same restraints he used for the weeks after his surgery. Poor guy!

January 3, 2003
- Toronto. Dr. Vendittelli saw Conall in his private office. Conall had "graduated" to one visit every two weeks until surgery (February 26). The plate & nose extension had done great work and now we just had to maintain the shape until the plastic surgeon did his work.

Dr. Vendittelli checking Conall's mouth plate. What a little guy laying on the dentist's chair!

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January 05, 2007

Pre-surgery Photo Shoot

Here are some photos of Conall and Mom just prior to his lip repair surgery. Aside from seeing what a happy little guy he is, you can also see how his alveolar ridge (gum line) is virtually touching after having used the nasal alveolar molding (NAM) device.

Much thanks go to Trevor Lush, a very talented photographer in Ottawa, for capturing such beautiful shots. Sick Kids Hospital's cleft team decided to use one of them on their website and information brochures -- with Trevor's permission, of course. Conall, you're famous dude! ;)

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January 04, 2007

Lip Surgery - February 2003

February 26, 2003 - 8:30am Sick Kids Toronto. Mommy takes Conall to check in for his lip/nose repair surgery. Conall had his last bottle of breast milk 4 hours ago. There are so many new people and things to see that he doesn't even notice he's hungry!


Alison, the cleft nurse, weighs and measures Conall before surgery. He doesn't seem to mind!

10:30 am - Conall's anesthetist and surgeon meet with Mommy and Daddy to describe the procedure. Conall will be under general anesthetic for the surgery which should last 3 hours.

Here is the last wide smile we will ever see!

A nurse takes Conall to the operating room.

2:00 pm - Waiting for 3 hours wasn't as difficult as we had thought it would be. Our friend Jane who works at the hospital was a great help and stayed with us the entire time. Finally, Dr. Fisher (plastic surgeon) came into the waiting room to inform us that the surgery was a great success. A half hour later, we go in to see Conall in the recovery room. We may only stay long enough to take a few pictures.

Nothing can prepare you for the first time you see your baby in a recovery room. He looked so helpless. We were very moved by the change in his face. It was easy to see right away that Dr. Fisher had done an amazing job.

3:30 pm - Conall is wheeled up to his room. By this time, there is some bleeding around his mouth and he looks pretty beat up. He will have morphine for the next 24 hours.

Conall wakes in obvious discomfort every so often - Niall finds laying a hand on his chest calms him.

Conall takes his first bottle of breast milk 3 hours post-surgery. He manages six ounces! This is a very good sign.

8:00 pm - It is a bit difficult to get Conall out of bed with his IV, but he seems to really like the rocking chair.

Day 2 - The nurses remove Conall's IV because he is eating so well. We are also told he may go home today. He is looking much better after a good rest. His nose is still a bit misshapen from the surgery, but we are told it will "relax" into shape. His skin is shiny from cream to help where the tapes had been for his mouthpiece. He is discharged later that day

Day 3 - Back at Jane's house in Toronto. Conall is taking tylenol and codeine now, but he seems very happy.

Day 4 - Three days after surgery Conall is looking amazing! He will have his stitches out in 5 days...

What an incredible transformation! Here is Conall over the 4 months of his life:

Day 7- Conall returns to the hospital for his stitches to be removed. Once again, he has to be under anesthetic but only for half an hour. The doctor inserts a "nasal splint" into Conall's nose which is held in place by tapes. The splint will help his nose keep it's shape and should be worn between 3 months and one year*.
* Note: we chose to discontinue the use of Conall's nasal stent after he wore it for just over one month - his skin had had enough of the tape!

Day 35 - Conall's follow-up appointment is held outside the hospital in our Van! All appointments were cancelled in the hospital due to the pneumonia illness (SARS) spreading around the world. Dr. Fisher (with Conall in the car seat) says Conall is doing great and teaches us how to massage the scar.

Conall's palate surgery is scheduled for the following fall.

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January 03, 2007

Palate Surgery - September 2003

September 12, 2003 - 12:30 pm. Sick Kids Toronto. Mommy takes Conall to check in for his palate repair surgery. Conall had his last bottle of breast milk 4 hours ago & 4 oz of apple juice moments ago. If he is hungry, he isn't letting us know!!

Alison, the cleft nurse, gets Conall ready for surgery. Nice gown!

2:15 pm - Conall's anesthetist and surgeon meet with Mommy and Daddy to describe the procedure. Conall will be under general anesthetic for the surgery which should last 3-4 hours. During that time, the doctors will insert ear tubes as well as repair his palate.

Dr. Fisher (Conall's plastic surgeon) poses with Conall before his surgery

A nurse takes Conall to the operating room

5:00 pm - Dr. Fisher comes into the waiting room to inform us that the surgery was a great success. The doctor who inserted the tubes in Conall's ears also lets us know that it went well. A half hour later, we go in to see Conall in the recovery room. We may stay long enough only to take a few pictures.

Conall looks really good after his surgery. Saliva mixing with the blood makes it look like more than it really is. The nurses have placed him on his tummy to help with the drainage.

7:00 PM - Conall is wheeled up to the Critical Care Unit where he will spend the night. The nurses have fashioned a tent to go over Conall to keep the air around him moist. We may visit him for as long as we wish, but he will be sleeping most of the time as the anesthetic wears off and the Morphine takes affect.

Day 2 - By morning Conall is up & alert, but swollen.. He took some water during the night much to the surprise of the nurse! He doesn't know what to do with his tongue, so he sticks it out.

Conall enjoys going for walks around the hospital. He is very sleepy and is still on Morphine. He is now drinking a bit of breastmilk from a soft-sip feeder. There is discussion of going home tomorrow.

We are beginning to see a bit of the old Conall back!

Day 16 - Conall wears arm-restraints for the 3 weeks after his surgery. We must be careful not to permit him to damage the new palate. He doesn't seem to mind too much!

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