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.