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Unilateral Cleft Lip and Palate
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After trying for 1 year and 3 months and with the help of a fertility specialist for 6 months we finally were expecting our first baby on October 7, 2002.
When I was 19 wks. Pregnant we went for the first ultrasound and we found out that we were going to be having a baby boy; we decided to name him Tyler Scott Satkowski. During the ultrasound they had found some fluid in the baby's kidneys and so my Ob/Gyn Dr. Craig wanted to send me to a specialist for a second opinion. The following week I went to see a specialist. After the ultrasound the doctor called us into his office and he sat us down and explained that they too had found fluid in the kidney's, then went onto explain that it was pretty common in boys and it usually reverses itself when the baby is born, they however decided they
want to monitor it just in case and to make sure it didn't get any worse. Then the doctor said those dreading words."We have found something else wrong", my heart literally sank to the pit of my stomach. He then went onto explain that they found out through the ultrasound that Tyler was going to be born with a cleft lip, he explained that it was easily corrected and that it is pretty common. He then told us that the palate looked in tact and so they thought it was just the lip. He then asked us if any one else in the family had a cleft lip, we told him no.
I was fine until we left the doctors office then I totally lost it in the hallway. I think everything had just settled in. My husband Scott was very supportive however and just stood and held me. I think he was also worried but didn't say much to me because I think he wanted to be able for me to lean onto him. It seems like we were both facing a lot of challenges that past year with the infertility and now
the fluid in the baby's kidneys and now the cleft lip. It seemed like it was one thing after another. I thought maybe God is just challenging us for this is our lesson in life. It was so hard though some days to believe that God would put us through all of this, however I knew that we must keep the faith and trust in God.
diminish. Every time however I would have the ultrasound done, Tyler would have his hands in front of his face so we were unable to get a better picture of the lip or for them to check again on the palate. The rest of my pregnancy was pretty uneventful and everything was going smoothly.
After the doctor visit we remembered that my husband Scott's niece was born with a cleft palate but not a cleft lip, she was born with Apert Syndrome and so they thought the cleft palate was associated the Apert.
I continued getting an ultrasound down about every 4 weeks so they could keep an eye on the kidney's everything seemed to be doing ok and the fluid was starting to
When Tyler was a week old we went and met with a plastic surgeon, Dr. Robert Forte that was part of a cleft lip/palate team. It was a very emotional day for us, especially me I got pretty upset the night before the doctor's appointment. Dr. Forte explained to us about the cleft lip repair and Tyler would have it repaired when we was around 3 months old. The doctor then went onto inform us that they will take a piece of bone out of his hip (I got really upset at this point and started crying). They would need the center of the bone to reconstruct his nose on the one side. He then went onto explain the he would repair the palate when Tyler was about 6 months old. The cleft palate affected his soft and hard palate. It was just so much to take in. Here we were adjusting to a new born and now we had to adjust to him having major surgery. Dr. Forte then referred us to an orthopedic surgeon that was also part of the cleft lip/palate team.
For the first few weeks we had some very bad nights and Tyler would just scream and scream we would try to feed him and we would eat just a little and then just scream and scream for hours. Finally the day arrived and we went to the orthopedic surgeon Dr. Spoylar, they made him a prosthesis
for his mouth, which they called a feeder plate, this is to help him eat much faster since it was taking him almost 45 minutes for him to eat, during that time he would fall asleep a
lot. My husband Scott held Tyler when they had to make the mold for his mouth so they could make the feeding plate, Tyler screamed and I cried. I am very greatful that Scott held him because I would not have been able to during the procedure, I was a total basketcase. The feeder plate helped a lot and it
now only took him 15 to 30 minutes to eat. Dr. Spoylar told us that he wanted to put an orthopedic traction device called a Latham device that will help bring the gap in his palate together more and this will have to be surgical put in.
We also had to turn a screw every day to help bring the device together also if Tyler needed tubes put into his ears the would do it at that time also. This was also supposed to be outpatient surgery. The doctor told us he would be cranky for a few days after surgery. He would have this device in until his Lip surgery. After Tyler had the feeding plate made he no longer screamed for hours at night. I came to conclusion that before the feeding plate was made he was so tired and he had to work to eat that he would get so frustrated would make himself so upset and thus would scream and scream. Thank God for the feeding plate!!!!
On Oct. 8, 2002 I went to my Ob/Gyn I was one day past my due date. They had found some protein in my urine and my blood pressure was elevated which could mean that I had toximea. So my Ob/Gyn decided that he was going to induce me that day. I checked into the hospital at 3pm and they put the gel on my cervix to soften it at 4pm, at this point I started having some contractions but nothing really. At 6pm my doctor showed up and He decided that he was going to break my water, after that my contractions really started and I was pretty miserable. Finally at 11:55pm I was dialated to 10 and was able to starte pushing and after an hour and a half Tyler Scott was born at 1:29am on October 9, 2002!! He weighed 8 lbs. 4.4 oz. and was 21 inches long. I remember Dr. Craig saying he has a cleft lip and palate, my heart just sank we didn't think he was going to be born with the cleft palate since the specialist seemed to think the palate was all intact.
They laid him onto my chest and I started crying. He was very, very beautiful but it was also very scary that Tyler had a cleft palate. He had a unilateral cleft lip and palate. During my pregnancy after we found out about his cleft lip I prayed and prayed that it wouldn't be severe and wouldn't extend all the way up through the nose. Tyler's cleft lip extends from the lip up, but stops right before the nostril, he had a little piece of skin that held the nostril together. (The doctor told us later that that was a good sign because if that little piece of skin wasn't there the nostril would have been more stretched.). Me and my husband Scott were prepared for the cleft lip, but were not prepared for the cleft palate. I had done a lot of research on the cleft lip but didn't do any on the cleft palate so I was completely lost on that. Reality was sinking in that this might be genetic since my
husband's niece was born with a cleft palate. I also really wanted to breast feed and more than likely Tyler wouldn't be able to now. The nurses said I could try but decided against it because if he wasn't able to then I would be more upset and I didn't want Tyler to get upset either. The first night they wanted to keep an eye on Tyler and so he was moved to the nursery. At about 5:30am that morning I walked down to the nursery to hold my little baby, I sat and rocked him and cried. I cried because I was happy that our long waited baby was here, I cried because of the surgeries he would have to endure, I cried because I didn't know what else to do. Holding Tyler in that moment was the greatest feeling I knew that everything would end up fine. The next few days were a blur we had to learn how to feed him from a special bottle we at first used the Mead Johnson's that the hospital supplied but I decided I didn't like them because I felt they were too big and I couldn't see very well around the bottle to make sure I was feeding him in the right spot. I started using the haberman bottle after that but didn't really care for it that much because it seemed like you had to have the top on just right or the milk would leak out. I finally went back to using the Mead Johnson's and now I really like them.
Tyler's first surgery was on Dec. 12, 2002, he had just turned 2 months old. They surgical inserted the orthopedic traction device also known as the Latham device and put tubes into his ears. It was very emotional day, I cried on the way to the hospital and while we waited for them to come and get Tyler. It didn't help that Tyler was crying because he was hungry, I think that made it worse. The hardest part was when they came to get him my husband and I both cried. The whole surgery took about 1 hour we knew as soon as we walked into the recovery room that it was our little baby crying. , it was very
emotional to see him hooked up to all these wires and IV. After being in the recovery room for over two hours they admitted him to the pediatric unit because he wouldn't eat. He finally starting eating and they decided to send him home on Tylenol and Motrin that we had to alternate every 3 hours. Tyler was in good spirits when we left the hospital but that wouldn't last long. Once we got home the screaming would begin for the next 5 days. We didn't get much sleep and I would end up crying with him. I totally felt that we were snow balled; this is not what we had expected especially since the doctor said he would be a little cranky for the first couple of days!! We didn't know if how he was acting was normal or not since I hadn't talked to any parents who had went through this procedure. We had to turn the device every day. We finally turned the screw on the Latham device around the 5th day that he had it in. He was sleeping when we did it and didn't even wake up when we turned it, however a few hours later he just screamed and screamed. We didn't know what was wrong with him, I started crying because I thought he might be in pain from turning it. I told Scott that we were not ever going to turn it again. However reality was that we had to turn it no matter what. The next day was better and he again was asleep when we turned it and that time he didn't scream when he woke up. After about 20 days the Latham device was totally activated and didn't need to be turned anymore.
Now we had to meet with Dr. Forte the plastic surgeon again and start the lip repair process. Tyler's lip/nose surgery was scheduled for Feb. 5, 2003, Tyler would be just 4 days short of being 4 months old I was very emotional and I found my self more than once on the verge of tears the days before the surgery. We met with Dr. Forte the day before Tyler's surgery and he told us the surgery would last any where from 3 to 4 hours depending on when he was satisfied with the results. My thoughts and feeling about his surgery were mixed with emotion. I knew Tyler needed to have this surgery but I thought he was beautiful the way he looked and could not imagine him looking any different.
Tyler's surgery went well and again was very emotional. They would call us every hour to tell us how the surgery was progressing and to let us know Tyler was doing well. This time when we went into the recovery room there was no crying and our little Tyler was asleep. When I first looked at him I started crying and couldn't speak, our little precious baby was so beautiful, and not that he wasn't beautiful before. Dr. Forte did an amazing job! Tyler's nose is so very perfect and his little mouth too.
Tyler stayed in the hospital that night and he slept for about 3 hours and would cry out once in a while, he then fell back to sleep and slept another 3 ½ hours. Tyler was on some really good drug medicine this time around in fact a lot of
pharmacies don't even carry it because it is used only for surgeries called Roxycodone, Dr. Forte had prescribed Tylenol with codeine but I asked the pediatrician at the hospital if they would write a script for Roxy since we knew that it worked for Tyler. They sent Tyler home the very next morning and the first night home Tyler slept 6 hours and then was up for an hour and slept another 4 ½ hours. He was doing really well and wasn't crying that much. He had to wear those wonderful No No's (arm restraints) for two weeks so he could not touch his face. We also were able to keep the Latham device that they removed; I couldn't believe the 5 pins sticking out of it!!! No wonder why Tyler was so very cranky and did nothing but cry his first surgery!
Tyler is doing wonderful now and his mouth and nose are healing beautifully he is a very happy baby. We just scheduled to have his palate repaired on April 30, 2003 hopefully this surgery goes as well as his lip surgery.
One thing that I wished was that there was a support group in our area where we live for parents that have children born with cleft lip/palates. I have met however some wonderful people through Tyler's plastic surgeon Dr. Forte before Tyler's cleft lip surgery that have gone through the same process and it was very reassuring to know what to expect and to know that they have gone through the same process, this is one reasonwhy I wanted to tell Tyler's story so people would know they are not alone. It was very stressful to try to adapt to a new born and not to mention a newborn that was very special and unique that was born
with a cleft lip/palate. It has been an emotional rollercoaster for the past 5 months but we are finally almost to the end. W would never trade Tyler for the world cleft lip/palate and all. If you would have asked me 4 months ago if I wanted to have more children the answer would have been "No", especially since the cleft lip/palate could be genetic. Now after going through what we have been through we could go through anything and I can definately see another child in our future. It makes you a more stronger person and I know Tyler will grow up to be a wonderful strong individual because he has conqured so much at such a young age. I feel that God only gives special parents his special angels, he knew that Scott and I would be able to deal with this and to help Tyler through every step of the way. We still have a long road ahead of us, not knowing what the future has in store.
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This cleftAdvocate page was last updated March 25, 2014