Johnny's Journey
My name is Teresa, I'm Johnny's Mom. Johnny IS the family trooper. His father, Brad, and I sometimes have a hard time understanding where Johnny gets his strength and courage. He's just started on the long road of surgeries and yet he's already been through more than most people will in a lifetime. Words cannot express how proud we are of him. He's taught us so much. We love sharing his story with others. We hope that hearing it helps other parents in similar situations. We'd like these other parents to understand, that life sometimes throws you through worldwinds...but you will make it!

This webpage's content is lengthy, but it's just an outline of events. Johnny's 'story' could fill a hundred websites!

My older son, Trent (7yrs) was beyond excited about being a big brother. He shared with everyone, that he and Johnny were going to be best buddies forever. He drew pictures of what he imagined his brother to look like and often asked if Johnny would look just like him. While excited, Brad and I were worried about finances, especially since I had just gotten through a long lay-off period.

I was 35yrs and a severe Anemic for some time, so I was beyond exhausted. I stopped working during my third-trimester, but had plans to return; we had no other choice? We did our best to make Johnny's nursery delightful and welcomed the financial support of family; my sister and mother-n-law threw us a shower too. We had everything taken care of; bedroom, diaper supply, clothing, toys and feeding essentials, all for our new baby. The baby that we knew would be the most beautiful gift...which he is.

My next door neighbor had an emergency delivery, so my c-section started a little late. Brad informed awaiting family members; one of which was Trent, who was super-excited about authorization of being allowed in the recovery room. The operation seemed to be going well and my doctor was his cheerful self. Johnny entered the world with a full-set of lungs and I immediately felt relief...because Trent had a year of Albuteral Treatments from birth.

Within seconds of hearing Johnny's first cry, Brad stepped back and gave me the most unforgettable facial expression. Tears streaming his face, he simply said, "It's gonna be okay Babe. He's still our baby and he's beautiful." My heart sank. Something was wrong. My doctor came to my side and said "The baby has multiple clefts Teresa. We're going to make sure there are no other abnormalities." I will never forget...the tremendous sadness and feeling of suffocation. Brad brought Johnny to me and asked, "Do you want to hold him? He looks sort of different." Looking down at my baby, all my expectations of the day were a blur. All I could think was, "Mamma is so sorry. What have I done?"

The hospital's L&D staff were most helpful and arranged for us, a private room. We were both a complete mess. Brad said that he'd try presenting himself as calm...go, prepare Trent best he could. Trent's wide grin diminished as he jarted into the room and asked "Mamma. Why you so sad?" Then he looked toward Johnny, who was back-side in his nurser-box, and asked, "Is that my baby Johnny?" I'll never forget the love in Trent's introduction. This 6yr child looked down at his brother asking, "Aw. What's wrong with his cute little lips? Can he breathe okay?" Then he stroked his cheek and softly kissed him on the head, whispering, "I'm Trent! And you're the bestest brother in the whole wide world Johnny."

It was Thanksgiving and the ward employees were on vacation. Aside from family, every person (including housekeeping) seemed excited about being around babies. They'd ask to see Johnny...pause, and become speechless. Sometimes they'd think of something like, "He has wonderful coloring" or "His head is nice and round." By the end of the week we were ready to rip faces off. We had heard enough "Don't worry, he'll have A surgery and the scars won't show!" One nurse warned, "If he's THAT darn hungry, he'll eat. You're young...you'll learn the hard way!" She couldn't run fast enough when we told her he had clefts and that I wasn't a first time parent. It was taking near 45 minutes to get 10cc (YES TEN) in Johnny! Of course, everyone had a 'friend of a friend...who had a cousin...who's neighbor...babysit for the brother of...UGH! Who gave them right to assume what we were feeling?

The 'back-up' staff was clueless to ANY of Johnny's needs; including the need to eat. The discharge nurse came to us twice about leaving...after all, it had been two days and my color was good! Brad, enraged, gritted his teeth and blew, "We're staying here until someone can tell us how to feed our little baby! You got that? He can't be the first. You people should know how to use this nipple thing! We're sick of being told not to worry about scars! If he doesn't eat he won't live to see scars!" 'Jill,' a PICU nurse, heard about our 'situation' and showed us how to assemble the bottle. It took her some time, but she found a good spot on his tongue and he drank 145cc! We actually kissed her - Johnny was at 4.2 lbs...much less than his 6.14 lb birth weight! We left the hospital, able to feed Johnny, but unable to console him. Aside from the ten-minute exhaustion crashes, he screamed ALL DAY-ALL NIGHT...no exaggeration.

Here, our baby was so young and innocent, yet in pain and screaming (literally) 22 hours daily. Saying we were lethargic would be an understatement. What energy we did have, was spent on things like; fighting with our insurance company, asking family for money, finding a doctor for Johnny, and trying to find disposable feeders under $28 a piece! (I forgot to mention that the hospital was nice enough to send home ONE bottle for 'convenience.' *$&%#)

We went through 6 doctors in the first week. Finally, one told us about the Cleft Palate Team at Children's Hospital of Detroit. It wasn't until our first Craniofacial appointment that we knew what kind and how many anomalies Johnny had. He was born with a cleft lip, complete (soft/hard) palate. The cleft in his palate was wide, extending past his Alveolar, upward and over into his 'good' nostril...giving him a cleft in his septum area. Johnny's cleft surgeon was eager to get things rolling. She said that she should have seen him the first week! She made miracles happen. She got us in - seeing numerous surgeons on the team THAT DAY. She explained Johnny's surgical 'future,' but when seeing ENT that day, we got yet another rude awakening. The surgeon said his ears were so blocked that he would have to undergo tubal surgery within 4 weeks or we chanced permanent hearing loss. No wonder Johnny was so unhappy...he compared the blockage to that of a quadruple migraine!

Looking back at our first appointments, I recall thinking "You SAY that you understand and have thousands of patients like Johnny. You SAY that you'll take care of everything. You SAY that there are other parents who've been through this." To our surprise, they've come-through on every promise. They've proven to us; that choosing the team was the right decision, that they will be by his side through every procedure, will do anything necessary to get him proper treatment and lastly...He's not just a 'numbered' patient with multiple clefts. They truly care for Johnny...and we more than 'care' for them...they've literally saved his life. We are often asked if he's "fixed" yet, and if he'll ever be "normal." Some ask who his doctor is. When asking, "Which one?" they look confused...it's hard hearing yourself explain that he has about 12 specialty physicians. We wish there wasn't need for so many procedures...but sadly enough, he's looking at numerous Cranio-Reconstructive surgeries, unknown amount of cosmetic touch ups, minimum of 2 sets braces and a crap load of therapy!

The team also arranged for us to meet with specific organizations within the community. We were beyond broke and we couldn't begin to imagine, when I'd be able to return to work. These community resources have honestly, saved our butts!

We found ourselves becoming friends with hospital staff, frequent patients and even the valet drivers. It had been roughly four months since his birth. Aside from 3 hospital admittals for dehydration, Rotovirus and Cardiology problems - We were at the hospital 4 days a week and that didn't include the routine pulmonary studies, GI procedures, Ophthalmology and orthodontic series! Oxygen tanks filled his room and he had a continuous ear infection. Feeding him was exhausting and fruitless. When he DID eat, it took 2 - 3 hours for each 4oz bottle. We had already tried 11 brands of formula when he was diagnosed with Reflux. He stopped drinking from the Haberman during the second week...immediately after borrowing money for the shipment. We tried Johnson Mead, Squeeze Tubing, The Pigeon, lamb nipples and crisscross generics. We finally got our break - a simple red preemie nipple! Johnny wore a prosthesis palate for nearly 14 weeks too. So, that in tailed going to the hospital for weekly fittings and removing/reinserting it for cleaning after messy meals. With every sneeze, nap and feeding came the duty of syringing his mouth and partial septum. I won't even go into the trauma of holding him down to 'tape' his face. Witnessing friends/relatives would ask, "My God! How often do you do this to him?" I know everyone had heard that we 'had our hands full' but seeing is believing. It's funny...the people witnessing medical procedures and feedings stopped asking when I'd 'get a sitter and have fun already' or go back to work.

Within 2 weeks of that first appointment, Johnny earned the reputation for being one of the feistiest patients. A little physical history? At 2 days old, he was holding/turning his head (fully alert and curious) and would prop himself on elbows. At 2 weeks, he was pulling himself on tummy. He cracked his prosthesis plate in half 2 times. He figured out how to tear his "NoNo's" off within hours of surgery. He was even a pro at rolling over at 4 weeks! The IV team cringed when they saw his name on the board...he was known for pulling his tubing out. When hearing home care instructions, I'd sigh and think 'Yea right. You take him home and make him do that!' Nurses would look at Johnny, (who was usually growling, yanking at his tapeline, or trying to climb their windowsill) and say "I'll rephrase that. TRY doing that. Knowing Johnny, he'll be 'the first' and make a fool of me."

Johnny's first surgery was at 6 weeks of age. Getting ear tubes transformed our "Tomato Head" (That was his nickname from beat red and screaming all the time.) into a content, smiling boy. He was a complete different child within ONE hour of surgery! I won't candy coat-it. He's now 12 months and we CAN count weeks of no ear infections on one hand. But he's happy...

The prosthesis palate enabled Johnny's mouth to form soft tissue where the palate should have fused. At 5 months of age, he had his first two major surgeries: Lip Repair and Rhinoplasty. He came through with flying-colors and was fine within a week or two. With this surgery came the use of Nasal Stints though. They've been the 'Brunt of all Evil" in our family's daily routine. Most patients wear the stints for 1 - 4 months. Johnny? Uhem...He's going on 10 months! We sometimes have to take the silicone stints out several times a day, flushing his nose and reinserting them with tape and liquid adhesive. That amount of reinserting was higher with Johnny, because he always 'messed' with that area. He's never gotten used this task. He still screams and breaks out into sweats every time.

Johnny has outgrown the Reflux and Sleep Apnea. And no, we do not miss seeing the Sleep Monitor, Oxygen or Pulsax Machine next to his crib. His ear infections have been brutal, (few caused his ears to drain formula and blood) but none of his infections have scared us as much as contracting MRSA (Worst staff known to Infectious Disease physicians). Johnny and I both have MRSA colonized in the pores of our skin so we will never be rid of it. Every time his eyes, ears, sinuses or throat (pretty much his whole head) has a major cold or skin opening, MRSA attacks with a vengeance. Our first bought was 1 week after delivery, I had it in my c-section line and he had it on his nail beds. Another, when he contracted Rotovirus...what a nice illness combination huh? The third was having it in my face and left eye...I swelled so badly that my eye was shut for 3 weeks and my lymph node was visibly protruding past my ear. Another time was right after a surgery, he stayed an extra 11 days for Vencomyacin - then bad luck of contracting some tummy virus forced him to stay longer. I of course, got the 105 degree fever immediately thereafter! He's had it in his septum's granular tissue twice. MRSA...stay the heck away from it!

Johnny's most recent major surgery was in September: Platoplasty. Johnny now has soft tissue coverage where the hard palate should have fused! This is a MAJOR breakthrough as far as most parents are concerned. He's breathing much better, not drooling as much, he's trying to pronounce sounds, best of all - he's eating Stage2 baby food without it coming through his nose!

Johnny's next 'tentative' surgery will be in 2006. It'll soon be amazing to see the uvula...to see tonsils...to hear him say more than MAMA! He'll also begin Occupational and Speech Therapy in 2006. As far as he's concerned, life is wonderful! He's now drinking from a SippyCup and we're SLOWLY initiating Stage3 baby food. He was also recently diagnosed with Sensory Oral Dysphagia, so he's unfortunately unable to experience the toddler foods that his peers enjoy. It also puts a damper on my returning to work because every daycare facility 'under the sun' wants to charge an arm and leg for children with disorders. Well, throw in speech, inability to eat or chew any textured food/drink, and continuous ear infections and you have a bleak situation.

He thinks Trent is the best thing since sliced bread. He's now walking, giving kisses and clapping his hands. He's addicted to Elmo and playing toss/ball.

I think we've all heard the statement, "Can't imagine life without him/her." Johnny has taken Brad and I beyond that. Saying that he's our "special child" is an injustice. He's shown us beauty in things we've always taken for granted. He's given us hope in ways we never imagined. Most of all, he's shown integrity - we just selfishly THOUGHT that we had been through tough times.

I've been asked, if able, would I change my life? What would be different? I believe, every loving parent, wants nothing more than a blissful, healthy, pain free, long life for their children. So for Johnny, I would bring him into this world without pain and suffering. As for myself? If I were to have a choice, I'd be satisfied with just half of Johnny's strength and courage.

*Teresa Croughen, Mom to Johnny; MiCleft Founder and Executive Director