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Words of Wisdom
It's Motherhood's Toughest Test You wonder how much people can stand. How they get up and go on under the worst of circumstances. How faith isn’t enough sometimes and hope is fickle and how sorrow wears you down. I see her walking in the hall, holding her baby. She passes the room where my family waits with my daughter’s baby for more tests and more doctors with their maybes and possibilities. I see her going in circles, not just on the physical loop that brings her past the nurses’ station and then our door. I see her going around and around, over and over, all day, every day. You look at her, head down, shoulders bent, a young woman but not anymore, her baby held tight against her chest, and it seems as if she is going nowhere. As if the circle has no end. This is what it is like when you have a very sick child. One problem is solved and another is created. One specialist says goodbye and another is waiting at the door. Her baby is 11 weeks old and doctors saved his life. He has brown hair and beautiful brown eyes that don’t show a hint of pain or sorrow or despair. He is in his mother’s arms. He is content. But her eyes are tired and sad and scared because her whole world is “This could happen” and “You have to watch out for that” and “Things look good for now, but let’s take it one day at a time.” Her world is white coats and disinfected floors and too much coffee and cafeteria food and bells dinging and phones ringing and pages going off and no sleep and no comfort. And the constant fear that at any minute it could all get worse. Sometimes her husband takes the night shift. Sometimes he brings in their 3-year-old for a visit. But mostly, she’s alone holding her baby, day and night, walking the floor, walking in circles. She is supposed to have gone home Monday. Brought her baby outside for the first time. Buckled him in his car seat. Let him feel the fresh air. But at the last minute there was a change in medicine, one more “Let’s try this” so there she was again, looking lost although she knows the route well. I don’t know her name. But we’ve talked and I know that she lost her mother not too long ago and that her aunts are trying to fill in the space. But the space is a hole in her heart that no one can fill. And I know this because my aunt tried the same trick with me. I also know that 11 weeks ago, this young woman was certain that she couldn’t miss her mother any more than she was missing her because when you’re having a baby you ache for your mother. You want to share things with her. But then you have a baby and you don’t just miss her anymore. You need her. You need her to mother you. I know in the end this woman will be OK. She has to be. You don’t get a choice sometimes. So you learn to deal. She’ll learn how to give her son the shots he needs and she’ll learn when to rush to the emergency room and when to see if the problem resolves itself. And she’ll learn that she’s stronger than she thinks. They are all strong, though they don’t feel it, all of these mothers and fathers who sit beside their sick children, who carry them around in their arms, who push them in wheelchairs with balloons. Who keep right on going, walking in circles, while longing for a way out. By Beverly Beckham. Post Traumatic Hospital Syndrome (PTHS) "After getting home from the hospital after a stay with my child, I feel like I have a Post Traumatic Hospital Syndrome. I generally feel pretty wiped out as if I am numb to the rest of the world. At the same time, I feel totally on edge. My sleep is all messed up and I find myself restless. I also find that I keep remembering things that were said and done in the hospital..." EJ Comment: In psychiatry, individuals who undergo a catastrophic or traumatic experience can develop a Post Traumatic Stress Disorder. This disorder is characterized by three types of symptoms: numbness, hyperarousal, and intrusive (or recurrent) thoughts where the traumatic event it re-experienced. The experience of having a child in the hospital is undoubtedly stressful and traumatic for many parents. While the above does not represent a "disorder," it does represent a group of feelings and thoughts that can be commonly experienced for days to weeks after a child's hospitalization. I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous trip— to Italy. You buy a bunch of guidebooks and make your wonderful plan: the Coliseum, the Michelangelo, David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland?!' you say. 'What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of Italy.' But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland." author unknown When children come into your life, changes occur; when your children are autistic or have PDD, BIG changes occur. I had been a full-time supervisor in a state agency, a card-carrying workaholic. Our daughter had been given the diagnosis of PDD. At the same time, my wife and I were having similar concerns about our son. In order to provide child care for our children, maintain a reasonable lifestyle and preserve our sanity, we decided that I should join her in the ranks of part-time employees. Looking back on this decision, the positive aspects have outweighed the negative ones. Granted, I am no longer a supervisor and I am not making the money that I once did. However, I am intimately involved in raising my children. I am with them during the day when we all have some energy to do things we find enjoyable, something very unlikely to occur during the waning hours of a workday. My priorities and focus have changed . Work is necessary but not primary. The important days for me now are the days spent at home. Activities normally associated with being a homemaker are the most rewarding— making breakfasts, packing lunches, getting the children dressed and out of the door for school, running errands and doing some of the housework. A couple of other things have occurred to me over the last few years. You learn to be available and to adapt. It is really important to be there for every one. Without a doubt, your children need you; doubly so, your wife. I like sports. Previously, I could have spent hours in front of the television watching any sport conceivable to man. Somehow, over the last few years, doing things with my children and for my wife seem much more important. Now, before I decide to do something, I ask if I can do something for Sue or if there's something she wants to do, then I'll take care of the kids. It is really important to get time for oneself even if it is nothing more than getting some nagging chore out of the way. On the lighter side, you learn to be more efficient. When it came to mowing the lawn or shoveling snow, I liked to do it the old-fashioned way with a push mower or a shovel. I no longer have the time. I am now into technology. Sue strongly urged the purchases of a rider mower and a snow blower. There is far less sweat and much more time to be spent with my family. Give a little, get a lot. There are those occasions that have you smiling on the inside. Sunday walks at a local mall and, of all things, trips to the doctor are a father-daughter thing. Sometimes, just taking a walk with my son watching him check out the territory and get the feel of different things like rocks or leaves or peat moss or anything harmless that he shows an interest in. It's also fun for me and somewhat disconcerting, at first, for teachers and therapists when I bring my children to school or therapy sessions. I guess it must still be unusual for Dad to be quite that involved with his children. Give credit where it is due— along with lots of love. I have a great wife who is also my best friend. She is a wonderful mother to our children. She has also been a great teacher for me. With our two children, our life is busy! It's a full time job. If you're not with the kids, you're thinking about them. I try to remember to tell her how much I love her. Hopefully on a regular basis, I do something nice for her. And, on the in frequent times when we are alone together, I know that they are special times. Richard J. McCormick III, M.A. Parent When living with a chronic physical illness, spending time confined within the walls of the hospital, a great support is having friends who immerse themselves in interesting and diverse experiences of life. My friends are the ones who motivate me to trudge through the difficult times, reminding me the world is an extensive school and there is much to behold, embrace, and learn. These are the folks who help to remind me that life is worth living and to hang in there....for the reward is sweet. Child Care In & Out of the Hospital David is 2 1/2 years old. He was in the hospital for 10 days. He had a twin brother and older sister at home. My wife and I dealt with the hospital in the following way. We began by assuming two things. First, that David being so young would need someone with him nearly all the time. We just wanted to be there for him. We did not care or want to go to procedures, but be present for him. Second, that we had to care also for our children at home. We do not have family around to help with this. The plan we involved was for my wife and I to split the duties. So for 10 days, we would alternate the duties. We would pass in the halls at the hospital. The nurses noted that David had different cries for each of us when we would leave. But, you know I think it helped keep our children going. We could play with David when he could. We could comfort David when he needed it. We could know what was going on. Our other children were able to continue familiar routines. We also would bring the other children to the hospital to see David. This went fairly well. It was more important for our older child than his younger brother given the age differences. I would definitely recommend using this type of approach. It was certainly hard on my wife and I. To do it again, I would add on eating together at our shift changes. I would have added in a grandparent or two, if they had been available. My husband and I were not worried.You may say that's crazy but you have to understand that we are Christians and we trust God 100%. When you put everything in God hands there is no need to worry. We knew that God has given to us the best Heart Surgeon at Boston Children's Hospital and Doctors in the World and God himself will be guiding the Doctors hands while doing the Operation. Thank you for everything your the best. JANUARY 14, 1999. I'm a doctor, but I am also a parent. I have learned in my work that parents who advocate for the child's care are very helpful to my work. Parents know their children's emotional and behaviors much better than I. I appreciate their participation in the care with their questions, concerns, input, and etc. I also know this can be difficult. How? I learned this 10 years ago as a parent. My own child was facing possible cardiac surgery. As this was being discussed, I realized there were differences of opinion between the hospital doctors. After going around with this, I went and spoke with our pediatrician. I asked him to help us figure out the best plan which, he was more than willing to do. As I returned to the hospital, I was surprised to find myself feeling frightened for my child. I thought what had I done by speaking with the pediatrician. I might upset the very people caring for my son. This sudden terror was just that terror. My rational side told me that I knew this would move things forward for my son. It was then I knew the fear that must come to the parents that I see. As a doctor, I had the advantage of understanding more fully what was happening. But nearly all my patients are not doctors. It made me appreciate the parents that I see everyday more fully as they struggle with their children. I still advocate for parents to speak up and join the our team, but at the same time I know what it takes. So anyway there I was my son supposedly was to have this tube pulled, but I was not sure that it would happen. I asked the first doctor that came into the room who said it would probably be tomorrow. Now, it seemed like he "probably" knew which didn't seem like he really knew. So I asked his nurse and she said in two days. She seemed sure, but now I had a different answer. One of his other doctors (we have many who come by) was near so I asked her. She gave a different answer. Now I was confused. So I ended up calling what the hospital calling by telephone the doctor who brought us into the hospital. He said, "Remember what I told you...10 days... tomorrow is 10 out tomorrow." It came out the next day. The moral of the story. There are many doctors and nurses who often, even though they try their best, often give conflicting stories. In a teaching hospital, there are many different nurses. Your child's care may involve interns, residents, senior residents, and staff doctors. Know who they are. The bottom line is the staff doctor responsible for your care at the hospital. Our Truncus Arterious Miracle-Part I On July 3, 1997, I went to the hospital to have a planned C-Section delivery of our 3rd child, a girl, Lacey Allegra Warner. I was 38 years old at the time Lacey was born so during her pregnancy my doctor did many tests for abnormalities and found NONE. We all thought I was having a healthy baby girl. Lacey was born at 7:05 am on July 3, 1997. Great color and so beautiful. I spent 4 nights in the hospital due to my C-Section. The day of discharge the doctor came in to talk to us about our baby. Everything was normal except for her left ear. It was a bit deformed and the doctor proceeded to tell us that this could also mean there may be kidney issues in the future. I was not too concerned, as I just wanted to go home with our new baby and to be with our other 2 children. Steve, my husband, was a bit puzzled and said, “I have a feeling that something is going to be wrong.” Back home we arrived to a decorated house with a HUGE stork out in our front yard and Lindsey (age 11) and Logan (age 23 months) running out to see their new sister. We were finally a family again (but not for long). Lacey enjoyed sitting in her swing. She was such a good baby. She never cried, always slept, and didn’t wake in the middle of the night to eat. I would wake her to feed her. She seemed to always sweat a ton, though. I was always changing her sheets in the little crib next to my bed. Little did we know that these were signs of heart failure. Lacey seemed to have a cold and a very runny nose so at age 2 weeks we went to the doctor for our 2 week check up. I mentioned the runny nose. The doctor gave me some PediaCare drops for her. She also told me that she heard a heart murmur but that it was normal for babies to have this and they usually out grow it. We had another appointment in 2 weeks for another check up. Two weeks later we returned and they listened. The murmur was not gone—it had worsened. This was a pediatric practice of all women doctors and was the BEST in town. We were able to get in with the new doctor who just was out of medical school and finished her residency and had joined the practice. She still heard the murmur and called several other doctors in to listen to Lacey’s heart. She scheduled an echocardiogram ( an ultrasound of her heart) to be done the next week and told us that there was a chance that Lacey may have a small hole in her heart and that it may need surgery or may close on its own. Well, I was HORRIFIED! When I look back at the big picture, I only WISH it was a hole in her heart! One week later we were at the hospital for an echo. At first the technicians were always so talkative and laughing and then they began to get very quiet. They finished and we had an appointment to meet with our doctor an hour later. As we walked out Steve looked at me and said, “Debbie, I have a feeling something is wrong.” I, too, began to worry.Our Truncus Arterious Miracle-Part II We arrived at the pediatrician’s office after hours, but she was waiting for us. We walked in and she was in tears. I knew that I better start crying if she was. I asked if Lacey had a hole in heart and the doctor said no, but she has Truncus Arteriosus. She had books all over the room and tried to explain what this very rare and complicated defect was. I was crying and not even understanding or listening. Steve was trying to grasp the information. Then I asked, “Does she have to have surgery?” She looked at me and hugged me and said yes. Health Net Fixed Wing jet was waiting at the hospital for us and we had one hour to get over there and they would then transport Lacey and one parent to the nearest hospital that was equipped to handle this type of surgery. I just about lost it. I was numb. I was angry. I was blaming myself for being 38 years old and having a baby. I was a total wreck. We arrived home and told the babysitter, a good friend of mine, that we had to go. I was throwing things in a suitcase and crying and just so scattered. Our other 2 children were listening but we didn’t think too much. We walked out that door and never did we think we would not return for 5 months. Steve drove us back to the hospital and as soon as we walked in a team of doctors were there waiting and grabbed, poking and starting IV’s. They put Lacey and I in the ambulance and we were off to the airport to get on the jet. Steve drove 3 hours down the interstate to get to hospital. Lacey and I arrived at the hospital 30 minutes later. They assured us that we had great doctors to take care of us. Two weeks later after they fed Lacey high calorie formula and let her grow, Lacey underwent her first open-heart surgery! She was 6 weeks old. It was the longest day of our lives! The hardest part was handing her over to the nurse to take into the operating room. At 5:00 pm they told us that Lacey was out of the OR and that we could see her in 1 hour. When I walked in the PICU (Pediatric Intensive Care Unit) to see my baby, I just about fainted. She was connected to tons of infusion pumps and, because her surgery was so complicated, her chest was left open until the swelling went down. They covered her up because I could not look. Steve looked at her little heart inside her chest beating. Our family was all there to see her, even the kids. They both reached over and gave her a kiss. It is VERY important to make the siblings a part of the sick child’s hospital experience. To make a very long story a bit shorter, Lacey encountered many obstacles and had many setbacks during her 5-month stay in the PICU. She had a stroke, heart attack and ended up with a feeding tube. This is NOT the normal with all Truncus kids. Please do not think that. We were in a hospital that had really never saw Truncus and did not have a lot of experience in this. If you know that you are having a baby with a heart defect during your pregnancy DO RESEARCH on different hospitals and find statistics. Some hospitals are more experienced than others as we found that out as our story continues.Our Truncus Arterious Miracle-Part III We arrived home in December and thought all was well! Deep in my heart I had a BAD feeling. Something was not right. Lacey was on tons of meds, a feeding tube, and on constant oxygen. We were so happy to be home though. We had a really cute medicine schedule all printed up and it just became part of our daily routine. We lived 2 hours from Steve’s parents’ house and 3 hours from our local hospital. For Easter we decided to go to Steve’s parents for the kids’ school break. As I tried to feed Lacey through her tube she would scream and cringe. The next morning she was just not herself. She was almost 9 months now. She became very lethargic and very discolored. Steve told me to put her down for a nap, that she was probably tired. I said no and that I was taking her to the hospital. I called the doctor and they told me to meet them in the emergency room. I had Steve’s mom go with me so Steve could be with our other children. When we arrived in the ER Lacey actually died in my arms. They worked to bring her back and rushed her to the PICU. A nurse told me “Lacey is very sick,” and that she was not sure how this was going to turn out. We knew all the nurses there. Lacey’s second admission into the PICU was 2 months. Again our family was split up, kids with grandparents and Steve took more time off his job. After 2 months I became very angry and told the doctors that I was not going to live like this and let my baby just lay there not knowing what was wrong. I was really becoming depressed. Lacey’s heart surgeon sent her information to a good friend at Children's Hospital Boston for a second opinion. One week later Lacey and Steve were on the jet, this time to Boston. Steve called me after the first day there and after the heart catheterization to tell me that they found her problem and that they would have to re-do her open-heart surgery all over again. I flew to meet the team of doctors and was impressed. I had confidence and kept telling them to fix my baby so we can go home. The doctor who was going to do the surgery said that it was going to be difficult getting into her chest as the artery was sitting right up against the bone. Lacey also had poor access for any IV’s as she had so many cut downs!! One of the cardiologists assigned to Lacey listened to me ramble on and cry, and on the day of surgery she was so supportive. We had a wonderful liaison nurse, too, who was so kind and understanding gave us updates every 30 minutes to an hour. We are so thankful for each member of the medical team who worked on Lacey. Surgery went well. The surgeon came out and drew us pictures and explained everything. Lacey was in CICU (Cardiac Intensive Care Unit) for 4-5 days because they did not have a bed on the floor. She did it! We went to the floor and stayed for about a week. We began feeding her foods with a spoon and we had so many people and therapists work with her. We arrived home 2 days before Lacey’s first birthday! What a fist year we all had. My advice is keep strong, keep faith, never give up and don’t be afraid to ask questions. If you are in doubt, speak up. Be involved in your child’s care. We have learned so much from this experience and how to be an advocate for our little girl. Do research and give your child the BEST! We thank Lacey’s great team of doctors, nurses and therapists at Children’s Hospital Boston. Lacey is now 8 years old. She did great after we returned home from Boston. The stroke she had in the beginning did affect her brain and she is mildly delayed. Her G-tube is out and she eats anything! She attends a normal school and is in special education 70% of the time. She has tons of friends and is very popular at school. It was hard to send her off to school, but when I see the excitement in her as the bus pulls up in front of our house, I know I cannot be selfish! You have to treat your cardiac child just like you treat your other children. Try to make their life as normal as possible.Our Truncus Arterious Miracle-Part IV Our other 2 children understand Lacey’s needs. They were involved throughout the whole year. Logan goes to Boston with us for Lacey’s checkups and the doctors know him too. He has learned a lot. I have to say, I experienced a lot of stress through all this. It was not easy. I did see a doctor in Boston who prescribed some meds to help me cope, and I tried to walk a lot and exercise. I had a very supportive husband who was there every step of the way. We were a team! I also started a Care Page from the link at the hospital that was wonderful. We posted pictures daily of Lacey so everyone at home and in her class could see her each day. I looked forward each day to reading the messages posted for us. Here at home I go to the gym each morning and spend 2 hours exercising. It is the best thing for you. I did suffer from Post Traumatic Hospital Syndrome, as well. The meds did help with that, too, for about 2 weeks after being home. I no longer take meds. I exercise! Lacey just underwent her 3rd open-heart surgery on September 20, 2005 to replace her pulmonary artery conduit that she outgrew! The surgeon did a great job and Lacey bounced back so fast. Our family has been through a lot and it changes you forever. We love to vacation a lot and do fun things. We take each day one at a time and try to deal with whatever is given to us. We have a great faith in the Lord above for helping us through all of this. NEVER GIVE UP! We knew that we were in good hands in Boston and if they could not help Lacey then in our hearts we knew that we gave her the BEST possible health care. We know that we will face more surgery, hopefully not for another 8-10 years!! We have faith and know we are in the best care at Boston! We hope with new technology that maybe there will be a new way to replace this artery! Updates on our family: Lindsey is now 20 years old and a junior in college majoring in psychology. Logan is now 10 years old and in 4th grade and is a big time snow skier and Boy Scout. Steve is now a Federal Prosecutor for North Central West Virginia. Debbie, a stay at home mom with tons of laundry to do and an advocate for Lacey! And the star of the show, Lacey, is 8 years old and in 2nd grade and has a boyfriend named John and LOVES school and life itself! Jared was born in the spring of 1991, on a Tuesday morning full of excitement. He came quickly, and he was good size, 8lb 10oz. Blonde hair and blue eyes-he looked like his grandpa. I always worried about him before he was born, as we all do. When he arrived he looked perfect. Two days later we were told he had a heart murmur. The next day he was sent to a different hospital for tests. The nurse baptized him before he left. The results came back, and they were not good. He had Tricuspid Artesia, transposition of the great arteries, and to top it off his heart was on the wrong (right) side of his chest (dextracardia). "What does this all mean?" we asked our neonatologist. To make a very long story shorter, she told us to go a pediatric hospital familiar with the type of heart problems Jared had. On July 4th, Jared had his first procedure, banding of the pulmonary artery (PAB). Time went by, Jared cried, and cried and cried. His birth weight had plummeted! He now only weighed 6 lbs. 15oz. In February of 1992 Jared had the Fontan Procedure. Started to grow and eat like a champ. We had a miracle thanks to that hospital! Jared went on to have his fenestration closed with a clam shell. He had a pacemaker put in when he was two. Jared is now almost 16, and is healthy, happy, doing very well socially and academically. He has his first high school girlfriend. He had his pacemaker replaced 18 months ago. He is looking forward to getting his first job and driving this summer. Don't give up hope, love your child, and treat him or her as if there were nothing wrong with them. Let them do what ever they want to if it is physically possible for them to do so. Jared plays on the golf team and lacrosse team at school. We've been in your shoes, and all we can say is be positive and believe in the doctors; they can be miracle workers. |
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© 2007, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated February 1, 2007 |
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