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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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:

• Cleft Advocate's Family-to-Family Connection
• Yahoo Group "PUMPMOMS"
• Joan Fisher -- lactation consultant

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

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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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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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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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!

Check-in

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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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!!

Check-in

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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One Year Post-palate Surgery

Here are some shots from a photo shoot in Feb. 2004 that show both what a happy guy Conall is, and the results of the excellent care the cleft team at Sick Kids Hospital gave to Conall. He was just over 2 years old in these photos.



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