Sunday, 15 April 2012

Looking Back

I was searching through one of my many binders full of Carter's paperwork (medical reports, school info, therapy info, etc.) and I came across an article I wrote when Carter was a newborn - back when my husband and I thought that we were simply dealing with the fact that Carter was born with a cleft palate and Pierre Robin Sequence. At that point we had no idea of the other challenges that lay ahead. 

The article speaks of the struggles Carter experienced just weeks after he was born. And it speaks of the many 'firsts' I experienced as Carter's mom, including the first of many times:

  • I felt powerless and unable to make things better for Carter.
  • I put my faith in professionals to help Carter where I could not
  • I followed a very strong maternal instinct 
  • I was forced to adapt to a difficult situation
  • I encountered something beyond the norm of what I thought I would experience as a parent 
  • I struggled through a hospital visit with Carter
 Here is my (slightly edited) piece from the Parent Perspective Column of the Chedoke Cleft Lip and Palate Team Newsletter, January 2004:

Our son Carter was born on September 8, 2003 weighing 7 lbs. 12 oz. We were so excited that he was finally here. With the help of the Cleft Lip and Palate Team we began educating ourselves about Carter's condition. He was born with Pierre Robin Sequence as well as a cleft palate. This condition often causes breathing challenges. The chin is very small, which means the tongue is crowded inside the mouth and it blocks the airway. Using special bottles, we attempted to feed Carter at home but he did not gain weight well, even though he appeared to be taking his formula regularly. 

At the age of 5 weeks, the pediatrician decided to admit Carter to McMaster Children's Hospital. She was concerned about his weight and his breathing. Carter had been working hard to coordinate his eating and his breathing and was therefore burning calories faster than he was able to take them in.

 When the staff at McMaster intervened we saw a major turn around in Carter's health. He needed a little boost and that is exactly what he got. He had a lot of catching up to do with weight gain and the ENT (ear, nose and throat) doctor set him up to do just that. A nasopharyngeal tube was put in Carter's one nostril to help him breath. The tube goes through the nostril and sits at the back of the throat keeping the airway open at all times. The tongue can no longer obstruct the entire airway, as the tube will always allow air to pass through. With the nasopharyngeal tube in place, bottle feeding creates a greater risk of aspirating spit up due to the positioning of the tube in the throat. Therefore, Carter required a nasogastric tube in his other nostril through which he was fed.

What an overwhelming few days we had when Carter was first admitted to the hospital. I will never forget the sick feeling in the pit of my stomach when the ENT doctor told us that Carter could require the tubes for up to 4 months meaning he could be in the hospital for that length of time as well. This was not what I wanted to hear. I was reassured when the nurses made it clear that lots of children go home with tubes and sometimes much more.

The challenge to train for Carter's return home began the day after he was admitted. Getting Carter home became our goal from the moment we found out it was a possibility. We wanted our family to be together in a natural family setting. 

I was very intimidated watching the nurses work with Carter. My first thought was that we wouldn't be able to handle it - we were not doctors or nurses. How would we ever be able to cope with this situation at home? We took it one step at a time and during Carter's stay at the hospital my husband and I had lots of opportunities to practise and become competent handling Carter's needs.

Three weeks after being admitted, Carter was healthy enough to return home and my husband and I were knowledgeable enough to take care of him. We had taken an infant CPR course. And we were fully trained in how to change Carter's nasopharyngeal tube, how to suction it when necessary and how to feed Carter using the nasogastric tube. Armed with several tubes, and what seemed like a pharmacy full of other medical supplies, we headed home.

People always say that your lives are forever changed after you have a child. Our lives were certainly changed in ways that we never would have anticipated. Before Carter was born I would not have pictured myself as the type of person able to handle changing a tube in my son's nose or checking the placement of a feeding tube in his stomach by using a stethoscope. Nonetheless, my husband and I dealt with Carter's medical needs. They became second nature to us. 

It has been ten weeks since Carter spent time at McMaster and I am thrilled to say that we made it! Carter is bottle feeding and he has grown significantly. He is now strong enough to handle breathing without the nasopharyngeal tube and has been doing so for four weeks. Carter's situation was indeed a challenge but it is one that we will cherish in our memories as part of our son's unique beginning in life.

Eight years later, I still cherish the memories of those first hurdles we overcame with Carter. Having dealt with a myriad of other unexpected challenges with him I find that I also look back with wonder and with appreciation. I have gained a different perspective on a lot of things in life and I have learned to appreciate them thanks to Carter. I certainly appreciate my boy for all he has overcome and for all he continues to deal with.


  1. I was so THRILLED to find you here! I didn't know you were starting a blog.

    I loved this post and Carter is beautiful! xo

    1. Thank you so much for your comment, Louise!

      I attended a breakfast/workshop with the Writer's Circle of Durham Region (WCDR)about a month ago where I sat with two lovely women -- one of whom blogs about her son who has Down syndrome. I felt motivated to get writing after that and I decided to take the plunge and finally start my own blog!

      How did you find me? Is it because I linked to your blog?

      I'll be bringing Carter to Holland Bloorview in May so I'll be in touch and maybe we can have lunch again.

      Take care!

  2. I know I have told you just a few times :) but here I go again! You are an inspiration!

  3. Thanks, Claire Bear! Back at ya!