Michael
by Barbara Hartley Seltzer. Written for Prescription Parents.
Barbara can be contacted at B&R Samizdat Express, PO Box 161, West Roxbury, MA 02132. seltzer@samizdat.com

Seventeen years ago I became a parent -- again, but it could have been for the first time -- so many things were different and new. The experiences I lived through helped me grow and mature as a person. Having Michael taught me the true sense of responsibility. A child came into the world who needed me and showed me what courage is.

Mike is my stubborn one, the one who won't be told what to do. He is an extremely private person, but he also is my child with a heart. He's the one whose life has been most out of his control. He would get involved with sports, but have to stop for fear of hurting his repair. He was teased when young because he looked different and talked different. He always had operations and speech therapy and occupational therapy and orthodontics to look forward to.

Seventeen years ago June 14 my son was born. Michael was born with a complete bilateral cleft lip and palate. My new life began.

Michael was born on his due date. He was eagerly anticipated by his brother Bobby, aged 5, and his sister Heather, aged 3. I had had an ultrasound earlier in the pregnancy because the doctor feared twins. I was so big. But there was only one baby - no problems were noticed, except the doctor thought it would be a big baby.

My water broke while I was helping my husband build a fence. I felt silly going to the hospital with no contractions. Less than one hour later and two major painful contractions, out came Michael. He was 6 lbs 8 oz.. So much for a big baby. I actually had a big umbilical cord!

Since there was no time to go to the delivery room, I didn't think anything when they took the baby away for a few minutes, but then the doctor came back with a serious look on his face saying Michael had a birth defect, a cleft ( A cleft occurs when parts of the upper lip and/or palate do not grow together. The tissue is all there, but there is a gap.). My husband and I had never even heard that term before. The baby was taken to the Special Care Nursery. I visited him there, but could not breast feed him. (He really didn't need to be in the Special Care Nursery. That was where the nurses knew how to feed him, but he didn't require any other special care.)

When I finally saw him, I was amazed how small he was. He had (and has) beautiful large blue eyes and was perfect, except he had a gap between his nose and mouth. It was like a little button. Over the next two months, the family became used to it. It was part of Mike and he was awfully cute.

It took a long time to tell people that Mike had a cleft. While in the hospital, I could cope with telling only one person a day. The doctors painted a bleak picture. They mentioned a heart murmur ( They didn't mention that a lot of babies are born with murmurs that go away). The surgeon said it was one of the worst cases of cleft he's ever seen. I cried the most I ever had or ever would.

Experts told me Mike would be a difficult baby - hard to feed, hard to get to sleep, fussy. Experts mean well, but they are not always right. Mike slept through the night at two weeks and was on a schedule of 4 meals a day at 3 weeks. He was the definitive easy baby I could take anywhere and did. He could not suck because of the cleft, so I could not breast feed him or even use a normal bottle. At first, only a few family members learned how to feed him his formula from a "brecht" feeder, which worked like a turkey baster. Later, after he began cereal, he got the bulk of his milk through a spoon and feeding became easier. A musical swing could always get him to go to sleep.

When I took him out and people would ask about his face, I freely told them it was a cleft. It was my way of educating the Public.

He had his first operation at 8 weeks old. One side of the lip was repaired. Just before he went into surgery, I wanted to stop the doctors and cancel it. He looked great to me. But I knew it wasn't realistic. He needed the operation done. The hardest thing for a parent is to see your child after surgery. Mike's face was all bloody and bandaged and he was in a mist tent. He looked like he had been on the losing side of a fight.

You learn to cope and live through things. You stay at the hospital, commiserate with other parents, and realize your son has a repairable problem, long, ongoing, but repairable. You're so lucky compared to others.

Mike had four surgeries before he was one year old - one side of the lip at 8 weeks, the other side at 4 months, the columella ( and one undescended testicle - we try to get the most for our money) at 9 months, and the palate at 11 months. He was tied down with a "straitjacket" (so he couldn't touch the stitches) and hospitalized for 1/4 of his first year. He developed a dislike for doctors.

Children born with cleft lip/palate tend to have ear infections and require tubes. Mike's first set was put in at 11 months, the second was put in at day surgery when he was two. They lasted (some sort of record, I'm told) for six years. He didn't need them after that. But for the first eight years of his life, he had to protect the ears from water. He wore ear molds and head bands (to keep the molds in) when he took baths or went swimming.

Michael had speech therapy and because his arms were tied down for so much during his first year, he needed handwriting practice. Mike also had a learning disability called Sensory Integrative Dysfunction, where too many things going on can overload the senses, that required occupational therapy. He still to this day paces when he thinks.

When Mike was 13, he had his first bone graft - bone marrow from his hip to his gum. He had a second graft at 15. His doctor is quite pleased with the results. At 16 he had his nose reconstructed and a deviated septum corrected. His orthodontist wishes Mike would brush more, but he's a teenager! What can you do? He will need implants and several new false teeth in the next few years, and his jaws may have to be moved.

Through all this Mike has been a "trooper." He has never fought me about the surgery. He stoically endures pain and puts up with the limitations the operations bring to his life. He doesn't complain or blame or ask "why him." He just copes. He's amazing. I've asked him how he feels about having a cleft, but he won't say. He says he doesn't think about it. It's his coping mechanism, I guess.

How have I coped? When I first had Mike, I wanted to learn everything I could. I read everything I could find and joined Prescription Parents, a local support group. I went to their meetings and talked to other parents of newborns. I went to lectures by the professionals. I lived day to day. I coped.

I tried to figure why it happened. Was it my fault? My husband's? Our genes? The Environment? We don't know. One child with a cleft is born for every 700 births. It might be a one-sided cleft (unilateral) of the lip or both sides (bilateral). It might be with a cleft of the palate or without. It might be just a cleft of the palate. No one knows what causes a cleft, but all the usual suspects are suspected. It's no one's fault. It can be inherited. You can't protect against it. It just happens.

Mike is now 17, a senior in high school, the school treasurer, has his own car, a part-time job, and takes the phrase "independent" to an extreme. He has more surgeries to endure, but he's his own person, and, if you can take a mother's word, a good looking kid.

He's a teenager who drives me crazy, but I'm very proud of him. Do I wish he never had a cleft? Of course. But given that the past can't be changed, I watch him grow and mature and come into his own. He's lived through a lot (character-building, so they say), but he's okay...........So, am I.

To see Behind Locked Windows, a novel written by Michael Seltzer (the subject of this article and now a junior at Northeastern) go to www.samizdat.com/window1.html

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Matthew
by Karen D'Almeida. Written for Prescription Parents.
Karen can be contacted c/o B&R Samizdat Express, PO Box 161, West Roxbury, MA 02132. seltzer@samizdat.com

At the time I am writing our story, five years have passed since our second son was born with a cleft lip and palate. How can I put all of the emotions and triumphs to words? I can only try to touch the surface of our experiences. But before I begin,let me first say that we could never have gotten through our "first year" without the many gifted, talented, caring, giving, generous, and loving people that we had for our support system. We were so fortunate to have had our surgeons, specialists, nurses, staff personnel, support group members, friends, and of course our families to help guide us through what could have been a difficult year.

It was January 1993, our baby was due in two weeks. We were at the obstetricians office for our routine visit, when we found out that our baby had a "questionable cleft lip." The next day, by ultrasound, it was confirmed that the baby did in fact have a cleft lip. It was one of those days that you never forget. Our oldest son was 32 months at the time. My husband and I put him in for his nap, and that's when we spent three hours trying to sort though what this news meant. All we had was a book from the public library and a million questions, some of which, to this day, go unanswered. I cried. What did I expose my baby to? Why was this happening to us? It wasn't fair to our innocent baby! I cried. Our baby wasn't even born yet, and we knew he/she would have it a bit rougher from the start. Within the one day I felt guilty, angry, sad, and scared (after our son was born I read somewhere that when you have a child born with a birth defect you have to mourn the "perfect child"). That was the first and last time I ever felt sorry for any of us.

I knew I had to focus my energy on delivering our baby, and that I did! Matthew was born January 28, 1993 at 9 lbs. 3 oz. What a healthy big boy we had. My husband's first words were, "It's a boy! It's only on one side! He looks fine!" We were truly ecstatic. We had prepared for the worse, we had seen many pictures and we were grateful for what we had been given. For that first day it was such relief and elation. We loved him immediately. Cleft lip and all, he was truly beautiful in his mother's eyes! The nurses seemed to ask me often if I was okay with everything. I spent a lot of time telling everyone that I was fine.

The second day was the hard part. We had to learn to feed Matthew so that we would be able to take him home. We tried several different styled bottles and nipples. It was a long and somewhat frustrating day. At 11 PM the day before we were supposed to go home, a wonderful nurse came to my room. She had worked in the cleft clinic at Children's Hospital, Boston (where we had chosen to have Matthew receive his care). We practiced feeding. She wrote down notes, told me stories of what to expect. I slept much better knowing that I had successfully fed our son.

We were a little nervous about going home, "could we really do this on our own?" Who had time to think?! It was action from the start. Appointment with the plastic surgeon to find out when the "good stuff" would happen. Appointments with the pediatrician for weight gain checks. And, of course, the usual baby stuff -- shots, etc., and coordinating all with the insurance company, and baby-sitters for our oldest son, and my husband's work schedule. Now that I look back on all of our experiences, the first ten weeks were the most intense. We were just going and going, and receiving so much information. In addition to all of the "cleft issues" we were dealing with all of the normal things too, adjusting to life with two children, explaining a lot to a three-year-old, finance, and work schedules.

I remember during the time from Matthew's birth until five weeks (the day of his first surgery), I told myself daily "all we have to do is keep Matthew healthy, keep feeding him successfully so he gains weight, and take everything else one moment at a time." It was difficult, very difficult. Even knowing that we had the best medical care in the world, as a parent all you want to do is keep your little baby in your arms and protect him forever, but we knew the day would arrive when Matthew's "repairs" would begin. The hardest part of loving your children is the conflict that arises from letting them "go."

I have to stop my story here in order to share with you some thoughts I have about our son, Matthew. When I held our newborn son in my arms for the first time I immediately felt a strength and peace from him. He has always been so easygoing and content. He finds pleasure in the simplest things and enjoys so much of life. I believe that he was born with a personality that has enabled him to be able to cope so well with everything he has gone through in his short life thus far. Matthew is such a special person. It may sound strange, but I have learned so much about myself and life from him that I will always be grateful for him in our lives.

Matthew had his lip adhesion surgery when he was five weeks old. We were so nervous about everything. The first time with anesthesia, the hospital stay, taking care of him afterwards,and of course his overall comfort. They were intense feelings. I didn't want him to have to go through it all, but I knew he had to. The details are what make the story sad and negative -- not being able to feed our infant before surgery, looking to his trusting eyes as the anesthesiologist took him away, and of course waiting and wondering if he'll wake up and be the same child we had known. The saddest moment of helplessness I have ever felt as a mother came when my husband and I entered the post-op area after the surgery. Matthew was hooked up to the IV, he looked puffy, and he was lifeless from the drugs. All I wanted to do was pick him up and take him away from all of "it." I must say, our first surgery was the worst. Even though we were well informed, nothing prepared us for the whole ordeal. We learned a lot about hospital procedures (that, of course, would help us for the future surgeries), and we went through the full emotions you feel with any "first time." It was difficult, but we knew we had to face it for Matthew's sake. The biggest lesson that I learned from our first hospital stay was that we were the voice for our child, and sometimes we had to be loud in order to be heard.

Matthew's final lip and nose repair was done when he was 15 weeks old. We were actually living a somewhat normal life until about 2 weeks before the surgery when we went into "hibernation" so none of us would get sick and pass it on to Matthew which could potentially delay the surgery. So there was that narrow window of contentment that lasted for about 6 weeks -- from 2 weeks post-op to 2 weeks pre-op. As I write this, I noticed that I have yet to mention the "welcoming sleeves." We called them arm restraints. While others saw them as cruelty, we knew they were serving a purpose. I had my days when I chose not to go places because I couldn't stand the look of pity and puzzlement on the faces of people as they looked at my son. I guess with everything else that we had to deal with I wasn't going to subject myself to the ignorance of others.

The magical moment came for me when we removed the Logan's Bow after the final repair. Matthew was always "normal" to us, but now he looked "normal" to everyone else. I wanted to invite the world over to see our miracle. That's when we all said, "Wow, thank God for modern medicine and for he opportunities we have to help our children." To this day people don't know that Matthew was born with a cleft lip. He looks absolutely outstanding and all of our thanks goes to our plastic surgeon. That day it was as if Matthew was reborn, and with that came all of the emotions that come with the actual birth of a child. Those feelings are indescribable.

The next 4 months were delightfully uneventful. We passed all the appropriate milestones, but always in the back of my mind was the thought of "one more (surgery)." Then it was the cup issue. Matthew had to get used to feeding through a cup because after his palate repair he would only be able to use a cup. To be honest, I don't remember it being too difficult. I must say that I think it was because Matthew was such a content baby who, to this day, enjoys his food no matter how it is served to him. I also believe that if it has to be done, it will be done. Attitude towards anything can make or break the success of the "mission."

We made it to the palate repair surgery in good health, with no more bottles. I still think it's incredible to have a 10 month old baby feeding solely form a cup. This post op was, for lack of a better word, interesting. Matthew's mouth seemed to be filled with the "packing" used to promote the healing of the palate. It was a bit messy at first. It also seemed strange for us not to be feeding him. The hardest part about this hospital stay was that we didn't sleep much at all, Matthew thought we were at the circus and everyone who came in to check on him was there to play. Like I said before, with all of the stress and tensions that this surgery brought to us, there was Matthew, the patient, having fun and making us all laugh. For some reason, the 5 weeks post-op time seemed to fly by, probably because we knew we would never use the welcoming sleeves again, and it would, hopefully, be the last surgery for at least a few years. At one of our post-op visits to our surgeon, he told us that we have no worries as far as Matthew's palate was concerned, he was like any other child at the same age. Those words were incredible.

Our "first year" was over. Our focus could turn away from lips, noses and palates and turn to life. "Normal" life that would still include more frequent visits to the doctor, and occasional visits to a specialist now and then, but a life full of appreciation for some experiences being in the past. As of this writing, Matthew is almost 5 years old, he is completely healthy, with an average of 5 ear infections per winter. He sees a speech therapist only twice a month, and we are anticipating that need to end before he begins kindergarten next year.

I believe that we are only given situations in our lives that we are able to "handle." Through adversity, we grow stronger. We have learned so much and have met so many people through our experience. We are so fortunate to have gifted, giving and loving people in our lives who are able to give of themselves so that our children can have a better life.

It was only after we had named our "Matthew" that we found out that his name meant "gift from God" -- what a powerful and beautiful gift he is. Thank you.

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