Tonja and Ian

Today, I will tell you the story of my youngest son, Ian. He will turn 24 on the 10th, and I would like to celebrate his journey on the planet.

When, my second son Alex turned 1 year old, I got an uncomfortable feeling. Something familiar…like,”I’ve been here before.” Sure enough…I was pregnant. This was totally unexpected, and since I’d had to resort to fertility drugs to get pregnant with Alex, I was not prepared to have this happen so easily. We were not unhappy in the least…just surprised.

I never had easy pregnancies, and this was no exception. In fact, my doctor had told me that this had to be my last baby. So, making it through the 9 months was not exactly pleasant. I began to suffer from anemia close to the end , and was on iron. My water broke one day at home, and soon we were off to the hospital. When I went in and they checked my blood counts, they decided to stop my labor and give me a few pints of blood before I could continue. So, it became a long, drawn out process. I had the best doctor ever, a friend, as well as my o.b. He pretty well let me call the shots as to the way I wanted to do things. I decided to do this birth with just some demerol, as I had my previous birth. So, I was well aware of what was going on. We knew some of the nurses, too, so the delivery room was a lively place. I told the doctor I wanted to be sure to get a picture of the baby being born. So, he called Don down for a picture,and as I felt the baby emerge, the room grew still and quiet. And Don did not take a picture. I leaned up to ask “why?”, and I saw my baby……with a hole in the middle of his face. I immediately went into shock. I felt like the world stopped for me at that point. I was well aware of all that was happening around me…but it was as if I was observing it from somewhere else. The nurse was calling the doctor…she was slapping my face, and my doctor left the business end of things to come up to my head. Leaning over me, he shouted,”come on back, Tonja, this is going to be fine.” They gave me several drugs and suddenly, I was back in the room with them. But, I was very upset and crying. He finished up with me and had me transferred to a room, where they gave me 2 more pints of blood. He ordered No Visitors and told me to rest. The pediatricians came and they said that the baby was healthy except for the cleft lip and palatte. That did not seem healthy to me. For a few hours, I could not even bring myself to hold my new boy, Ian David, but all that changed when a verse started running through my head…”I will lift up my eyes unto the hills. From whence cometh my help? My help comes from God.” I felt as though God could not do this to me again, I was still dealing with the cancer of my oldest son…..but, God did not DO this to me. It happened and He was going to help me deal with it. So, that was the end of the self pity. Now to find a way to take care of this child. No one could really give me much advice…most of the nurses had never seen a cleft child before, let alone know how to feed one. But there was an older nurse, who was a member of our church, and she made it her personal mission to find a way to feed him. She ordered all sorts of things from Birmingham and we just tried the trial and error method. Finally we found that using a preemie bottle with a hole cut into the nipple worked the best. He could not suck, so the formula had to be squirted onto the side of his cheek. There was a hole in the palatte going through to the base of the nose…what was there, and so most everything put into the mouth came out of the nose. It was a MESS. But, you could see, even from the beginning, that Ian was a fighter. He was tested for several syndromes, but he passed all tests with flying colors. We stayed in the hospital for about a week. The doctor said I could stay as long as I wanted, until I felt confident to take him home. Finally, we decided it was time to go. As we were preparing to leave, God did a marvelous thing. He sent me a special visitor. Our pastor at that time was Dr. Samuel Maddox. He was an older man, probably in his 70s, with snow white hair and the kind of smile and demeanor that left no doubt that you were in the prescence of a godly man. He walked in and took my hand and said these words to me, ”Oh, I’m honored to be here with you. You are highly favored by our Lord. He has chosen YOU to be the mother of this baby. How He must trust you!” Well, I felt what he said down to my toes and knew at that moment that God had sent this child to us on purpose…he had chosen us to parent, and guide and nurture him. All was well with my heart from then on. And home we went. Adam thought he was “cute”, but little Alex said his “face was broke.”

So began our journey with Ian. And it was not easy. Because he would tire so easily, he could only take an ounce of milk at a time, which meant feeding him every hour. And he took in so much air, that he had terrible gas pains…all the time. And since he choked so badly, he could not be laid down flat…he had to sit in an infant seat all the time. Oh, the days were long…and the nights were long and they ran into one another. Most everyone but myself was afraid to hold or feed him, so most of his care was from me. We did begin to find a routine, though. And Ian was a little trooper…he would fight along with me. We began to search for a doctor to take care of him. Our first stop was to a plastic surgeon in our town who said to me, “Now the first thing you need to know is that he is never going to look normal.” This was not the thing to say to me, so we gathered up our stuff and left. Never went back to him, either. I called one of Adam’s surgeons in Birmingham and told him about the clefts and asked for his guidance. He said the top 2 places in the country at that time were University of North Carolina and Miami. We called the doctors at UNC, since we had relatives fairly close by, and they agreed to take him on. We made our plans to see them as soon as he turned 3 months old. We were not prepared for what happened next.

I was sitting in our bedroom one morning feeding Ian, when he suddenly went limp. He was white as a sheet and cold and clammy and I could not rouse him. His heart rate was very fast. Calling my neighbor, I left Alex with her, and tore off to the doctor’s office. They hooked him up to a heart monitor quickly and sent us to the hospital. Turns out he had a heart condition called Paroxymal Atrial Tachycardia, or PAT. Which means that his heart would beat so fast, that it would not pump oxygen through his blood. We stayed in the hospital for several days and they found a medicine to regulate his heartbeat. Thus began a long struggle with regulating meds. But, we were able to go back home and deal with it there. Thank goodness for my medical training.

Soon the time came to go to the hospital in North Carolina. We were excited to see what they would do to fix our boy. We fell in love with the doctors and their approach to this condition. Because having a cleft involves so many different areas, they used a team approach to care for his needs. When ever we would go, we would see several doctors,: psychologists, ENT, plastic surgeons, dentists, orthodontics, oral surgeons, speech therapists, audiologists,and breathing specialists. After we had seen them all, they would meet together and plan out the next phase of Ian’s treatment, and then a representative would meet with us to fill us in. They did all the coordinating of care, so we did not have to. It has been a wonderful system and has worked well for us these past 23 years. Plans were made at that first visit to close Ian’s lip. That was done when he was 4 months old. He sure looked different. We could tell who he looked like finally, his big brother, Adam. The after care was horrendous. How do you keep a baby from touching his face or turning over on his face or rubbing his face on a blanket? It is not easy. First, he had to wear arm splints, so he could not bend his arms, and touch his face. Secondly, someone had to stay beside him 24/7 to keep him from turning over and disturbing the sutures. And he had to wear a metal brace over the lips. Oh, and he could not attempt to suck on a bottle. He was 4 months old! We had to feed him through a syringe. and a long piece of rubber tubing until the lip had fully healed. But, we made it, and were able to come home and wait the next big step, which was to close the pallet. This was not done until he was 14 months old. So there was still this hole in his palette and food still came out his nose. But, he soon learned to take his bottle himself. Still, he could not suck, but he would lay the nipple of the bottle along the side of the mouth next to the gums and bite down on it to squirt the milk out. He wanted to do it himself. Told you he was a fighter. Feeding him baby food was a trip in itself. Put it in his mouth, it comes out the nose, scrape it off the nose, put it back in the mouth, and so on and so on and so on. We were counting the days till the next surgery. Oh, how naive we were.

As time came for the second surgery, we were excited about the possibilities this would open up for Ian. He was still having to eat every few hours and still choked quite a bit, so he had to be watched constantly. But, we were managing fairly well. We checked into the hospital when Ian was 14 months old for a cleft palate repair and a lip revision. They would completely close the palate and do some refining work on the nose. FYI: When we are being formed in the womb, our faces form from the outside by the ears and meets in the middle, and closes together along the 2 lines above the upper lip and the middle ridge in the palette. When there is weak muscle or some other problem, instead of the 2 sides closing together, they grow up to attach to a stronger tissue. This is why the lips of a child with cleft curl up. Everything is there that is needed for a perfect lip, it’s just not in the right place. In the palate, the tissue that is needed to close the palate, rolls up along side the gum. As in the lip, all the tissue that is needed to cover the roof of the mouth is there…it is just a matter of unrolling it and sewing it in place. Sound easy? Imagine doing all this in the mouth of an infant. These doctors are truly miracle workers. When I asked his doctor how he was going to work in a mouth so tiny, he told me that I did not want to know. I asked no more about that. Ian was taken to surgery, and we were told that as soon as he could drink from a cup and keep liquids down, he could leave the hospital. [We were so blessed in the fact that my mom’s family all still live within 2 hours of the hospital. We were able to stay with my Aunt Marie for all of these surgeries, and still be close enough to get back to the hospital if needed. She has been a Saint to open her heart and home to us all these years.] When Ian came out of surgery, we were shocked. He looked awful. He was swollen so badly and there was a long string attached with a stitch running through his tongue. This was in case of swelling, his tongue could be pulled back to keep his airway open. He was again in arm restraints…and he was mad! Drink from a cup..”.no, thank you. I will have nothing. Just do NOT touch me!” All he wanted to do was lay in our laps…but nothing to drink. We started by giving him chocolate milk( his fav) through a syringe. He would swallow a few drops but nothing else. Now this hospital stay was particularly nerve racking…he could not use a sippy cup…he had to drink from a regular cup! Mercy! We went round and round for a few days and then I decided I had had enough. I was secure in the fact that if I could get him back to my aunt’s house, I could take care of him and see that he drank. So, I’m ashamed to say…I lied. Yes, I did. I told them that he was drinking from a cup, and he wasn’t. Now, I do not recommend this, but I also knew that I had sense enough to take him back to the hospital if I could not do it at home. So, off we went. Back to my aunt’s house. Now, Ian was not cooperating with my plan, and I knew he had to drink. CAUTION: This may sound a little drastic, but it worked, and we all lived to tell about it.

Please don’t judge me. In some situations, you just have to do what works until something better comes along. The team of three, Don, Aunt Marie, and myself would lay him on the floor. Aunt Marie would hold his legs, Don would hold his head still, and I would straddle his chest with a syringe full of chocolate milk. When he would open his mouth to cry, I shot in a little milk. It worked. The milk stayed in…but he was not a happy camper. We managed to get a few ounces in every few hours and we did this around the clock for 3 days. Finally, I think he just gave up and decided it was going to be the cup or the floor feedings. From then on, he drank from a cup pretty well. He was still in arm restraints and unhappy…but at least he was eating. After 2 weeks, the doctor said we could come home, and could start on some soft foods. And life became much easier after that. He still had a few places in his palate that would leak, but for the most part…all was well.

He started in speech therapy at the age of 2…he was ready to talk. And he has never talked with a nasal sound. Don and I felt that it was as important for him to sound well as it was for him to look well. Since the cleft extended through the gum line in the front of his mouth, much, much orthodontics had to be done. He has had bone grafted into gum twice and began wearing braces when he was about 6, until his second year of college. Can you imagine? As I said before…everything was there, it was just in the wrong place. Teeth came in in the strangest places and had to be moved or pulled. It was always one procedure after another. All along the way, we would continue to shape his nose or refine his lips. He had one of his hardest surgeries while he was in high school. They took cartilage from behind his ear and used it to build up his nose. More bone grafts. In total, about 10 major surgeries….visits to UNC every year and countless trips for orthodontia treatment with a doctor here who, bless God, knew the doctor in N.C. and was able to keep within their guidelines and time lines. His last surgery was in November of last year when the oral surgeon tried once again to close up that last little hole in his palate. But, it still didn’t work, so Ian is just going to have to live with that. The doctor said that He could straighten his nose a little more, if he liked…but Ian decided that he was happy with his look, and did not want more reconstruction. He had veneers put on his teeth last year and they are beautiful! Talk about a MILLION DOLLAR SMILE!!!!!!

His heart condition has given trouble off and on since the beginning. Eventually, we had to have surgery for it. First, in Birmingham. This procedure did not seem to help, so he had to have it done again, but more drastic. He is much better now, but will still have a few break through attacks, but these are usually managed by meds.

Now, it is devastating when you see your baby for the first time and you see anything less than perfection. But, our prayer to God was that He would give Ian a personality that would outshine his facial imperfection. That he would be outgoing and happy, and never let this defect be a hindrance to him. I am here to testify to you that God answered our prayers abundantly more than we asked. From the very beginning, Ian has been the kind of child who was going to be your friend…whether you wanted him to or not. People were drawn to him and he has never had a problem talking to anyone. We tried to give him all the tools he would need to deal with this as he grew. Even talking about what others may say to him. I was so proud when his kindergarten teacher shared this with me…. ” several of the kids noticed Ian’s scar and started asking him why he had a scar on his face. Of course, as kids do, when one starts something, they all join in. Soon, they were all talking about Ian’s face. The scar and the nose, which was crooked. He asked me if he could talk to the whole class at one time, and I said yes. He stood up boldly and said, “when I was born, my face did not finish growing. So the doctor had to operate on me and put it together. That is why I have a scar. Now, don’t ask me about it anymore, it just like any other scar.” And with that, he sat down…and nothing more was ever said. He has always had many friends and been a leader among his peers. He loves the Lord, and seeks to serve him in all he does. He has finished college at Samford University and is in grad school there now. God has blessed us all with the gift of Ian. He has been stubborn and willful at times, but as a Mom, I can say that I have never worried about him getting into trouble or taking the wrong path. When he would go out as a teenager, I did not fret or worry. He has always surrounded himself with the highest caliber of people. He has friends of all ages and has always been one to stick up for the underdog…even when it was not the most popular thing to do.

I have to give thanks to my wonderful family. My parents , and my late Mother-in-law, have always been at the ready to help in any way. With 2 other boys, there was always much to be done. And my sister, Joy, has stepped in numerous times to do whatever was necessary. Even though our lives were turned upside down so often, God provided a built -in support system to always be there for us. I also have super friends that I can call at a moment’s notice.

O.K. This is getting mushy, but I wanted to say all of this as a testimony to God who blesses us so richly above what we deserve. Even when things start out uncertain…He can work it all out to perfection. “He has made everything beautiful in His time.” Ecclesiastes 3:11

When I asked Ian about including early pictures of himself, he did not hesitate. “Sure, ” he said.

So, I offer you this photo gallery to see some of the changes he went through.