Ryan's Cleft Palate

Born with a Cleft Palate

Ryan was born with a complete bilateral cleft of his hard and soft palate.

We knew that there was a great possibility that Ryan could be born with a cleft palate.  Patrick has Stickler's Syndrome and cleft palates are associated with this syndrome.  We had ultrasounds at the  Maternal Fetal Medicine downtown Grand Rapids and at Dr. LaGrand's office.  The technician assured us that he didn't have a cleft palate.  Looking back knowing what I know about Pierre Robin sequence it is so obvious that he has a recessed chin in this ultrasound picture and knowing that a recessed chin also means most likely a cleft palate, we should have known. 

Severe recessed chin

 I ended up going into labor with him at 30 weeks.  I was admitted to Spectrum Health and put on bed rest.  They gave me Magnesium Sulfate for 3 days.  It completely wiped me out.  I was so weak that I couldn't take the top off my chap-stick.  Once I was stable on Procardia, they sent me home after 5 days in the hospital with the understanding that I would lay flat on my back/or left side.  With the help of my husband and church, I was able to lay flat on my back for 7 weeks.  I was able to keep him in until he was 37 weeks old. I had a natural birth and when he was born...we knew instantly that something was not right.  The nurses took him away and wouldn't let me immediately see him.  I said "just tell me if he has a cleft palate!"  They said that they couldn't say anything until the neonatal specialist took a look at him.  Then they let us hold him and we knew right away by looking in his mouth that something was wrong.  He had a cleft palate.  Thank God that I didn't deliver him at 30 weeks! My heart sank.  He also had a severely recessed chin, which we later learned was Pierre Robin Sequence.

 Daddy was sad that he had the cleft...we knew at this point it was going to be the start of a long journey...

Recessed chin due to Pierre Robin Sequence...

Hugging Ryan one last time before he was send to NICU.

What bothered me so much is that people didn't really know what a cleft palate was nor how to deal with it.  We were at Spectrum, a big hospital.  I remember telling the nurse who was pushing my wheel chair down to the NICU to see Ryan that he had a cleft palate and showing her a picture of Ryan.  She said: "Oh,you can't even see it!"  Of course you can't!!!  It's in the inside of his mouth.  I felt like at times I was doing more of the educating of the nurses than they were of educating me.  

It was a whirlwind of learning how to deal with feeding and figure out what was going to happen to Ryan.  After having a daughter born a preemie at 32 weeks, and having so many issues with feeding, I wanted nothing more than to have a "normal" baby who could breastfeed.  The nurses were very supportive of me and we didn't give up on breastfeeding right away.  I wanted Ryan to be breastfed.  We meet with lactation consultants who helped us get him latched and he latched like a champ...but his cleft was so severe that he couldn't make any suction.  It was like drinking out of a straw with a big giant whole in it.  So...I became reacquainted with my breast pump and begin pumping my milk for Ryan. Since he couldn't suck like normal, we had to feed him using a different bottle.  It was called a Haberman Feeder. 

I would pump milk and then we would feed him the milk.  The leftover milk would then go in the fridge or freezer for future use.  At first the whole process took about an hour from start to finish to pump and then do his feeding, which was naturally slower since he couldn't suck as well.  This was so tedious with a small 20 month old child at home who needed my attention as well.  

In the NICU, Ryan was hooked up to all sorts of monitors, these told us if he was getting adequate supply of oxygen and how his heart was beating.  If he was struggling for oxygen, etc.  We found that when he was feeding on his back it was harder for him to breath, because of his recessed chin his tongue would fall back.  Ryan had to be propped up to feed, and to sleep. We also held his chin forward when he would feed.  This was all a learning process.  The second day of Ryan's life, we met with Cathy Knottnerus who is the nurse and team coordinator at the Plastic Surgery Craniofacial group for Dr. Robert Mann.  She gave us some awesome suggestions on how to help Ryan and resources for us to read.  Upon discharge, we met with Dr. Mann, who would be following Ryan as he grew.  We set up a tentative plan going forward.  

The Monitor

Ryan went home with a monitor.  This monitor was a blessing and a curse.  It was able to tell us if Ryan was breathing or his heart rate would drop.  It would alarm all the time.  We had to have CareLink come out and download it every week to see his "events."  If he was event free for one month, the monitor could go away.  It was a nice "safety net," as every new mother is worried about their child.  But, I DID NOT want to depend on it.  I remember one night, I had just fallen asleep about 2 AM and the alarm went off.  I FLEW out of bed to make sure Ryan was still breathing.  He was fine and the tabs had just fallen off of his skin.  It was an awful feeling to be startled awake thinking your baby had stopped breathing.  Over an over the monitor would alarm.  We had hundreds of false alarms due to the tabs not making good connections to his skin.  We never ever had any real events, so a month after he was home the monitor went bye bye!  With positioning we were able to help Ryan breath and felt very comfortable as he grew. 

Ryan's First Cleft Palate Surgery

We waited until Ryan was 14 months old to do his cleft palate repair.  It was a rather large cleft and Dr. Mann wanted to wait until his jaw was wide enough.  He also wanted to wait until his jaw moved forward.  By 14 months Ryan's jaw had moved forward almost completely.  He will always have a "soft jaw."

Ryan had his first cleft palate surgery on January 6th, 2010.  It was a surgery we dreaded for 14 months!  

We were prepared for the worst. We knew it was going to be a rough surgery and a rough six weeks after.  Dr. Mann did the surgery at Spectrum Children's Hospital in Grand Rapids.  We got there early in the morning as he was the first surgery of the day.  One of the worst parts was sending him back to surgery.  I was able to carry him back to the operating room and hold him while they put him out.  It was the worst feeling having your child being put to sleep in your arms.  He went limp in my arms and they quickly took him and shuffled me out.  I cried...a lot!  I clung to my rosary and said the rosary as a distraction.  It was a long surgery, over 5 hours.  Since Ryan's cleft was so expansive, Dr. Mann ended up making a tissue graft from his cheeks to close of his wide cleft.  He wanted to make sure there was still a blood supply to that tissue so he left the flaps attached and over his gums.  He would detach these flaps during a future surgery.

His eyes were so red from crying...

Ryan stayed in the hospital for two days.  He hated it.  It took him so long to wake up after surgery and then he just cried for hours...rubbing his nose.  Dr. Mann said it was from all the narcotics they gave him.  Ryan cried a lot for the first few days and was not himself.  He would not sleep in the crib in the room, he only wanted to sleep in my arms, or in the big bed.  We were supposed to have a private room, but had a roommate for the first part of the night, then they moved us, upon Dr. Mann's request to our own room.  I used the extra bed to sleep in, although I wasn't supposed to, but that is the only place Ryan would sleep and I could not get comfortable in the chair.  He had to drink before we could leave (and take out the IV, which they were also using to give him Morphine.) We got him to drink some chocolate Pediasure and were able to go home in the afternoon the next day.

Drinking his lunch for 6 weeks after surgery!!!

The nights were rough, it took a long time for him to get back on a schedule due to all the medications.  He was a pretty sore dude for a few weeks.  It helped to have Rachael around to play with during the day.  He had to wear "No-No's" on his arms so he couldn't put anything into his mouth.   He had to return to a liquid diet for 6 weeks after.  It was pretty painful for all of us.  Ryan LOVED solid food.  So we had to get very creative with his diet.  Pure liquid for two weeks and then pureed and strained food for four weeks.  Some of his favorites were cheese soup and chocolate Pediasure blended with peanut butter!  I was so worried about his recovery and healing.  Every little thing worried me.  One day, when Ryan was drinking his lunch, milk and food was coming out of his nose.  This was not supposed to happen.  I freaked out again, and called Dr. Mann.  It turns out Ryan had a small fistula.  A small part of his palate opened up again due to the healing process and shrinking of his tissues.  We had several post-op doctors appointments and during the last one, Dr. Mann said that we would have to have another surgery to cut his cheek tissue away in about 6-12 months and fix his small fistula (hole).

Ryan's Second Cleft Palate Surgery

Friday, October 29th, 2010.  Ryan had his second cleft palate surgery.  He had just celebrated his 2nd birthday 9 days earlier.  This surgery was going to be a quick revision.  We had to be at Spectrum Children's Hospital at 5:30 AM to prep for his surgery.  This time, he knew what was going on and what was going to happen.  He clung to Patrick as we walked down the long hallway to the surgery center.  Tighter and tighter as we got closer. 

Such a little cutie in his tiger PJ's

Getting worried, he would stuff his blankie in his mouth.

 Dr. Mann was going to snip his cheek flaps/graft away from his roof of his mouth and close his small fistula.  He also snipped/stitched Ryan's lingual frenulum.

  We found out late that Ryan was tongue-tied.  This was possibly affecting his speech.  He couldn't stick his tongue out AT ALL (so frustrating) let alone push his tongue up to the roof of his mouth to make a "D" sound.  I took him back to the operating room again and watched him go to sleep.  That doesn't get easier the second time around, it was still very difficult. Surgery went very well and he was out in less than an hour and we were on to the recovery room. He wasn't very happy and was ripping everything off, which Dr. Mann said was okay.  He was a space cadet coming off the anesthesia.  We were quickly moved up to his room and could go home when he had a drink.  We were home by 11 AM.  Ryan had to be on a liquid diet for 2 days and he was out Trick-or-Treating with his sister the next day!   

Halloween 2010

Cleft links:

http://www.cleftline.org/