One Of This Month's Featured Families!
September 2002

Unilateral Cleft Lip/Bilateral Cleft Palate
I'm Liz, wife to a wonderful husband, Gregg, and mom to three amazing kids.  Here is our story.

When I was 15, my parents decided to grow our family through adoption.  Four-month-old Jackie became my little sister, and constant companion.   As I grew up, I felt that someday I would adopt a little girl.  In my early 30's, still single, I started looking into adoption.  As I gathered paperwork, I started
hearing rumors of massive layoffs coming to my company.  As the layoffs started, and my department continued to shrink, I realized that this was not the time to pursue a family.  In 1996, after years of worry, I quit that company in order to devote myself to finding a new career.  I bought a computer to work on my resume, and in the process, discovered chatting on the computer.

Gregg was a college student at Marshall University.  He was in charge of the computer labs, and when he wasn't helping people, he would chat on the computer.  This is where we met.  He and I spent hours chatting together.  He told me he was very shy, especially around girls.  He said he had been born with a cleft lip and palate.  He was born at a rural hospital and immediately at birth was taken to a bigger hospital in Charleston.  His lip was repaired the day he was born, under local anesthesia.  His mom never saw his unrepaired lip.  In fact, she did not get to see him for several days, until she was released from the hospital.  He told me a lot about his life.  Despite all the surgeries, he managed to do well in school and got a scholarship to college.  He was the first and only person in his family to go to college.  (Someday maybe we will tell Gregg's life story).  We chatted for a long time, and finally talked on the phone.  A few months after that, we met in person.  We knew we had finally found our soul mates.

We got married in April 1997, and immediately started trying to have a family.  At the end of April, Gregg had jaw surgery and was wired shut for 5 weeks.  In the late fall we decided to start infertility treatments.  These plans had to be put on hold because we discovered that Gregg needed to have open-heart surgery to repair a severely defective mitral valve.  At this point we also started discussing adoption. We felt that we should try to have a biological child first, and whether that was successful or not, to also adopt.  The infertility treatments were not a success, so we started getting our paperwork together for adoption.  Because we had been prepared to have twins through the infertility treatments, we decided that we would ask to adopt two children, a boy and a girl.

In August 1999 our paperwork was in the system and Gregg had another surgery, this time to repair his pharyngeal flap.  It was a rough surgery for both of us.  Right before his surgery, we received word of a little girl available for adoption who had cleft lip and palate.  After much soul searching, we decided that we were not ready for that challenge.  We needed to get Gregg's surgery done before we could take on more medical needs, and somehow we just knew that she was meant for another family.  (She was immediately accepted by another family and is happily settled in her new home.)   In October we got referrals for a little boy and a little girl.  We knew right away that they were our kids.  We traveled in December and came home December 24, 1999 with our 11-month-old boy and 6-month-old girl.  With Taylor and Macey home we were a family at last.

On Thanksgiving Day 2000, I started having severe pains that I could only describe as my ovary rupturing.  My parents came to watch the kids and Gregg took me to the ER.  After several hours and lots of blood work, the nurse came in and said that I was pregnant!  Gregg and I laughed and said "Oh, you must have the wrong room".  She said, no, not the wrong room.  We were shocked.  She also said that I had high blood sugar and they needed to contact my OBGYN right away.  After she left the room, Gregg and I decided that I must be having an ectopic pregnancy, and that would explain the horrible pains I was having.  We knew that ectopic pregnancies were dangerous to the mother, and the baby would not live.  We were so worried.  They took me for an ultrasound and showed us the baby.  I asked if it was in the right place, and she said yes!  Turns out I was 8 weeks pregnant.  We didn't even know what to think.

My OBGYN insisted on admitting me to the hospital right away to get my sugars under control.  I was devastated.  This would be my first Thanksgiving with my kids!  I cried and cried.  (I'm sure the hormones didn't help.)  I was sure that our other children's lives were ruined!  I was afraid that my age and the high blood sugars were going to cause horrible things to happen to the baby.  I wanted to be happy. We had tried for so long to become pregnant; it just didn't seem fair that it happened that way.  Once we got the results back from the amniocentesis we were able to relax a little and start enjoying things.  I started to see how it was going to be a great thing for the kids, not a horrible thing.  Still, I was afraid to get too attached.  I could see how devastating it would be if we lost it now. 

Because I was considered a high risk pregnancy (diabetes, age, Gregg's cleft), we had a lot of ultrasounds.  For a long time, the baby would NOT cooperate and let us see if he had a cleft lip.  Eventually we convinced ourselves that he didn't.  Then at one routine ultrasound the nurse pointed to his face and said, there - that is a cleft lip.  It hit us like a ton of bricks.  Both Gregg and I cried.  They sent us for a level 2 ultrasound and they confirmed - bilateral cleft lip and probably palate too. 

A later ultrasound showed a hole in his heart, but they said that was pretty common and usually went away on it's own.  This was scary, but we had heard about this, and handled it pretty well.  Around this time we discovered that at some point during the pregnancy, I apparently had CMV (Cytomegalovirus).  This can cause VERY terrible birth defects.  There was nothing to do but wait and see.  So with all the happiness there was a lot of fear, stress and sorrow. 

Throughout my pregnancy, I went for healing treatments and gentle massage therapy.  I truly believe that this helped both the baby and I.  I highly recommend them.  (Our Children's Hospital has Healing Touch people on staff and they come work with your child before and after surgery. We used them every time.)
I'm Liz, wife to a wonderful husband, Gregg, and mom to three amazing kids.  Here is our story.

When I was 15, my parents decided to grow our family through adoption.  Four-month-old Jackie became my little sister, and constant companion.   As I grew up, I felt that someday I would adopt a little girl.  In my early 30's, still single, I started looking into adoption.  As I gathered paperwork, I started
Joshua James made his appearance to the world on June 24, 2001 via c-section (after an unsuccessful induction and 18 hours of labor).  He was head down, but face up.  The doc said she opened me up and there he was looking at her!   He was born with a unilateral cleft lip and partial bilateral cleft palate.  He did not have any signs that the CMV affected him.  After allowing ourselves just a moment of sadness that he was cleft affected, we celebrated how gorgeous he was, and how precious and special he was to all of us.
At the insistence of the Lactation consultants, we tried to breastfeed Josh.  I had really wanted that experience, but it only ended up frustrating us both.  I ended up pumping for 4 months.  This was really tough, since I had to pump every 3 to 4 hours, and it took a lot of time away from the kids.  Taylor was 2.5 and Macey was 2 at that time.  I ended up having Macey to keep me company, as a special "girls" thing together.  She was having a hard time not getting to spend much time with me.    At that time we used the Mead Johnson bottles.  After the first month, Josh HATED to be fed, and it was a terrible time for us all.  We had to supplement the breast milk with formula to give him extra calories. 

When Josh was a week old, he had an echocardiogram done.  Since the genetics doctor had never called me back about getting us a referral, we had our pediatrician set it up.  We didn't have an appointment following the echo, so when there was a huge delay in telling us to head home, we knew something was wrong.  It turns out his heart defect was much more severe than we expected.  After they finally found a doctor to talk to us, we found that he had Tetrology of Fallot (holes between the chambers, and too narrow of arteries to the lungs and body) and a defective mitral valve.  We were totally devastated.  They assured us that it was correctable, and told us what kinds of problems to watch for (mostly that he could turn blue).  They said they usually corrected Tetrology defects around the age of 6 months.  We were on constant alert for anything unusual.
The pediatric dentists refused to put in the Latham device (a retainer like device pinned to the roof of the mouth with a screw to turn to help align the gums and pull them together), even though they got approval from the cardiology team.  Instead we used the tape method.  As days passed, Josh's breathing got faster and faster.  What was happening was that Josh had a very mild Tetrology, and rather than too little blood getting to his lungs, too MUCH blood was getting in.  Because he was in congestive heart failure, his liver was getting enlarged too.  They decided to do his heart repair early.

In September 2001, at three months old, Josh had his first surgery - open heart.  We got a real break when they discovered that the arteries did not need to be widened - all they had to do was repair the holes.  They did not touch the mitral valve, and we will watch it to be sure it stays functional.  They said that while it was defective, they would more call it "different' and hopefully it will never need to be repaired.   The surgery took place on Monday and we were home on Friday.  Joshie was on Tylenol only for pain by the time we left.
Since the heart surgery took place early, and was so successful, AND since Josh still didn't have any teeth, the dentists agreed that they would put in the Latham device.  In November Josh had his second surgery to put in the device.  When we went back to the recovery room, he was smiling and happy.  The surgeons and nurses were really impressed by his good nature.  The Latham device was AMAZING.  The tape had really loosened his lips, you could pull them together now, but the gums had barely moved.  The device moved the gums to only millimeters apart.  It was really worth it.  At first, it was scary turning the screw, but he only got skewered once.  (For days we called him Josh-ka-bob).  At the end, we couldn't reach the screw and had to take him to the dentists for them to turn it.
In January of 2002 Taylor turned 3 years old.   A few weeks later, the plastic surgeon (PS) did Josh's lip repair and the pediatric dentists removed the Latham Device.  I was a wreck.  I was so in love with that adorable face and smile that I couldn't bear the thought of him looking different.  I cried for weeks before the surgery.  Once we got into the recovery room and saw his sweet new face though, I fell in love all over again.  I still miss his gorgeous wide smile, but the new one is totally Josh.
In April the same plastic surgeon did his palate repair (hard and soft), and an ENT put in ear tubes.  There was a lot of packing in his mouth and as it came out, more and more food came out his nose.  I could see this crevice that looked like the Grand Canyon, but I had no idea if it was closed at the top or what.   The PS kept saying that there was no hole, and that he couldn't really see in Josh's mouth, but we would have to insist that he even look!  Finally after another unsatisfactory visit, I took Josh to his pediatrician and said - Can YOU see in there?  She flipped him over and said "Yep, BIG hole!"  We called the PS and he said that he would repair it in a few months and could even do a nose repair at the same time.

I emailed the cleft list and got many responses saying not to do it so soon, that there was a high failure rate if you don't wait longer.  We consulted a different PS on the same cleft palate team, and he said he would not do it before a year, and that he would NOT recommend
repairing a toddler's nose.  He made so much sense.  We are regretting very badly that we didn't go to him in the first place.

Since the hole is so big, it affects Josh's speech and feeding.  We are having OT and speech people out every week to work with him.  The obturator (a retainer like piece of plastic that is adhesed with denture cream and covers the hole) the dentists made is too narrow for our comfort and is a choking hazard, so they are planning to try to make a safer one at the end of the month.  We are really upset about this setback, especially since this surgery would have made such a difference to Josh's communication, had it been successful.  Josh has learned to sign the word "More" and is getting chubby on all the cookies he's getting from using it.
In June Josh had surgery on his penis.  He was born with Scrotal Tethering (the penis is enclosed in the scrotal skin).  Once they repaired that, they discovered he also had Chordee (bent), which they repaired as well.  He has healed up nicely from that surgery.  Now the only surgeries left should all be cleft related.

In June also, Macey celebrated her 3rd birthday and Joshie turned one!  Gregg had his first Fathers Day with 3 children.

Well, that's our story.  Life has sure been a challenge lately!  We've really had our hands full juggling Josh's needs and Taylor and Macey's.  Luckily they are all well adjusted and seem to have a lot of compassion and understanding of Josh's "boo boo".  They are such great kids that despite the rough times we have had a lot of fun.  Check out the zillions of pictures at our web page.  We love showing them off!!!
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