Our wonderful daughter Valerie is born on June 3rd, 2003, she was expected for July 25, that would be the first of plenty of surprises. Though times but more then anything great moments that will embellish our lives forever.

She weighted 2 lb. 12 on. because of an intrauterine late growth and of course being premature. I gave birth premature because of an unstitching placenta. Funny thing is I had a surgery right after the delivery because the placenta would not come out.

So the 1st month everything was fine, her brain, her heart, lungs. So they said we will just keep her for a couple of weeks until she gain enough weigh (that usually brings you to your due date). She was tube-fed for the 1st month because she was to small to drink, to much efforts. After that 1st month, they said it was time for her to start drinking on her own, that’s when the real problems started. It would take 1 hour for her to drink 1 ounce of milk, she would end up exhausted and pale from the efforts, they said it is normal because all preemies have a hard time taking the bottle at first. They said after 2-3 days, she’ll be fine, I was confident, we were in a children’s hospital, one of the best in Canada and even North America.

After 2-3 days, it was not going better, it was getting worse if possible. After 1 week, she was in pneumonia, weighing 4 pounds, great….Then we really started to worry and the medical staff too. We became expert in reading their faces, eyes and to read between the lines when they spoke to us. I have studied 2 years medical archives, so I understood a hell of a lot more then they thought, which they realized pretty fast by my questions and implication.

So being in pneumonia, they made an X-Ray of her lungs to find out there was milk on both lungs. The pneumonologist requested a videofluoroscopy (to follow the path of the milk from mouth to stomach) ASAP. It was done the next morning, after only 1 zip of milk, the radiologist shouted STOP, the milk goes straight into her lungs. So he transferred her to the Ent ASAP. We saw her the next morning, she did the laryngoscopy and said she had seen something that she had to confirm by doing a laryngobronchoscopy in OR (operating room) the next morning, that would be the 1st of 8 surgeries (I am including the tests because it is the anaesthesia that we fear isn’t) ?

The next morning, when the ENT gets out of OR, she explained that what she had thought the previous day had been confirmed. Valerie had laryngeal cleft, type 1, it is an extremely rare malformation due to badluck, accident of nature, whatever you want to name it, it is 1/40 000 birth. She explained she would try to avoid surgery and let nature ill the cleft, there was 50 % chances. She wanted to wait at least 1 year because the larynx takes 18 months to be fully mature. Then they did all kinds of tests to find out if she had a syndrome because laryngeal cleft is often related to a condition of syndrome like Pallister-Hall or G-syndrome but she had no syndrome.(Great to hear good news once in a while)

They have tried to give her thickened milk with rice cereals for several weeks, it never worked, so we all (the medical staff, and us (Dad and I) opted for the gastrostomy (2nd surgery) so we can brought her home and she could grow in a normal environment instead of the hospital where she had been for the last 3 months since her birth. At that point, she also had other problems like reflux, asthma, aspiration, coughing, chocking, gagging, stridor (she got out of the hospital with the cardiac and respiratory monitors on top of the tube-feeding). She also had a cardiac malformation (intra-ventricular communication) and late growth due to prematurity and the time spent in hospital.

So for the next 2 years, we try to live a normal life between gavage, medication, vomiting (2-3 times a day for the past 3 years of her life). Physiotherapy, occupational therapy, speech therapy, dysphagia clinic, GE and all others 10 million appointments per week, she webt up to 10 specialists at the children’s hospital.,no wonder I stayed at home 5 years. During those 2 years, she had a gastroscopy (3rd surgery) because her reflux was so bad, but it seems like everything was fine with her stomach.

After that 2 years, when we saw the ENT and the cleft was not repaired and still the same size, she decided it was time to do something, wanting to avoid the open surgery, she tried a new technique in which she inserted a foamgel into Valerie’s cleft endoscopically. She tried it twice (4th and 5th surgery) because it sometimes worked the 2nd time, but it did not both times in our cases. The foamgel was absorbed by Valerie’s system within the next 48 hours, the cleft was the same.

Then she told us she would have to do the open surgery which she has been trying to avoid for the last 2 years. She explained us Valerie would be put on a ventilator for at least a week after the surgery and kept in an inducted coma. She explained us she had 0.5 mm. space to work to repair the larynx because on 1 side there is the trachea and on the other side the vocal cord. She filled all the paper work and told us we would get a call 1 week prior the surgery. The ENT (Dr Giguère) also told us she was the only one that could handle this surgery in the province of Quebec, other then that, we would have to go to Toronto sick children’s in Ontario or the United States. She said she had done this surgery twice during her residence in the States. But never as a leader of the surgery, however she was confident and we were too. I don’t know how many times I prayed that nothing wrong happens to Dr Giguère. We were pretty low that evening.

Finally comes March 30 2006, the day of the open surgery, Valerie is 2 years and 10 months. The surgery lasts 5 interminable hours where every minute is like an hour. Around 14:00, Dr Giguère arrives in the parents room attending the OR radious and with a big smile, satisfied of her work. She said everything went perfectly, it all worked the 1st shot, she said it went even better then in all the scenario cases that she had planned. We were over the cloud, that surgery was finally over. I won’t go into details about that surgery. Firstly because it would be way too long, I could write a book only with that sugery. And secondly, it is too difficult, I don’t want to hurt or discourage people that might be waiting for that surgery to happen. Each case is different. The 7th surgery is 1 year later, the ENT had to check the laryngeal cleft repair by laryngobronchoscopy.
Everything is perfect.

Now we have the green light for Valerie to eat anything she wants or likes, but that’s not how it worked. It took nearly 2 years of occupational therapy to remove Valerie from G-tube feeding. She had been on G-tube feeding for the last 3 years, why would she start to eat by mouth now? She’s chocking all the times and on top of that she is not hungry because of the gavage (I’m trying to think like her at that time). She was terrified about eating by mouth but we made it after 5 years of G-tube feeding, we were finally ready to remove her gastrostomy (8th and last surgery). Right in time for starting school.

Valerie has now been in school for the last 2 years and our life came back to normal, she is very happy, enjoy schools, is good, she catched up on everything. She has lots of friends. Just like if nothing happened, people that did not know us before like teachers for example can hardly believe all she’s gone through. The only thing remaining is her reflux and she also not gaining very much weight although I find she eats pretty good.

Annie
10/03/22