I am taking a Human Lifespan Development class this summer and am needing some help with an assignment. If you are a parent of a child with Cystic Fibrosis and would be interested in answering the following interview questions, I would greatly appreciate it:1. What (if any) was the impact of Cystic Fibrosis on the the development of you child? Any specific examples?2. In what ways has your own development been influenced by raising a child with Cystic Fibrosis?3. What advice would you offer to prospective parents who may have a child with Cystic Fibrosis?Thank you!
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Raising a child with Cystic Fibrosis
- Thread starter KayGonz
- Start date
I got pregnant April, 2003. In August, 2003 my ob/gyn recommended that I take the CF screening. I agreed thinking, "what could it hurt?" I found out that I am a gene carrier. My doctor recommended that my husband also get screen since I am a carrier. He refused. He said it didn't matter now because I was already pregnant and we strongly agreed not to try to abort. My son, Dillan, was born 4 weeks premature due to my female problems on Monday, Dec 15, 2003, at 11:00 am. Monday night around 10:00 Dillan had a very small hard bowl movement (BM), that only the nurse saw when she changed him while I was talking to the other nurse. By Wednesday, Dec 14th Dillan still had not had a second BM. I was worried and massaged his belly. He continued to nurse on schedule every 2 to 3 hours. I asked the nurses, neonatologist, ob/gyn, and my family doctor if I should be worried. They all said as long as he was nursing, and his belly was soft and quiet we did not need to worry. I did not until Thursday morning at 6:30 am. Dillan began crying and was not comforted by nursing. I called the nurse and asked to speak with the neonatologist. She went to get him. Dillan sneezed and out came the BM. I changed his diaper and was shocked at the sight. He passed a BM that was over 8 inches long; two adult fingers wide, and so hard it could not be broke apart by pressing with a thumb through the wet wipe. I called the nurse again, of course crying my eyes out this time. The nurse told me that was not a normal BM and called it a mucus plug. She took the diaper and BM back to the nursery to show the neonatologist. The neonatologist came in and talked to me about the BM. He told me the bad news that this was a sign of CF and recommended that we all get screened for CF. I told him I was already diagnosed as a carrier. He then strongly recommended that Dillan get tested that day. I agreed. The nurse took Dillan back to the nursery. I did not see him again until after 1:30 pm. We were told we would not get the test results back for several weeks, and they recommended that my husband and 6 year-old daughter get screened as well. They both came out free of the gene. Dillan came back a carrier with mutations. We have been through many tests for him since, like the sweat test, more extensive DNA tests, chest x-rays, and physical exams. Dillan has not had any more symptoms since. The Dr.'s said he could have "clinical CF" because of the mutations, but THANK GOD we have not seen any signs yet! I can tell you the fear I had was overwhelming! I cried a lot! I thought, "How could this happen to my son when no one in my family has this problem?" EVERY PARENT WANTS A "NORMAL" BABY. I understand that completely. You see, last year I took on a new job, teaching special education preschool. What a coincidence? I have remained strong for my child and my family as we have been working through this time. I read a poem called Welcome to Holland. It is about a family having a baby with special needs and how you just learn to live with it and accept it as life, and it's still good although different. My son is now 6 months old. He is developing typically, thank the dear Lord! He is in the 90th percentile for height and weight for babies his age. Can you believe that out of a baby that was 4 weeks premature? We are blessed!I have changed in the way I help families cope with their day-to-day events with their special needs children. We try hard to look at them as slightly different, but still a blessing from GOD!I try to help families find resources to help them with their needs, not just their child's needs. I know that made me feel good when people helped my child, my family, and me. I want to pass that on.The advice I offer is to remain strong. To know that God only gives us what He knows we can handle. If you think you cannot cope, remember God thinks you can! Keep going strong for your family because they need you! NEVER give up on them or leave them because things are tough. They need you and you need them. Hard times are what make families stronger! Give up the luxuries and appreciate what is really important in life! YOUR CHILDREN AND THE QUALITY TIME YOU SPEND WITH THEM! Your child will love you no matter what special need they have. Children's love is an unconditional love. Please give your children your genuine love as long as you are blessed with them. Remember, there are many people who are not able to have children and would give anything to be in your shoes, just to have a baby to love!Find support people outside your family to help you cope with the hard times. They may not always be easy to find, but they are out there.It long winded, but straight from the heart!Sincerely,Lee Ann
1. Emily was diagnosed at two days of age with Meconium Ileus because she required surgery. She was transferred from the hospital she was born in to Yale New Haven's Newborn Intensive Care Unit and stayed there for about 7 days after surgery. She was sweat tested at six monthsof age to confirm the diagnosis fo CF but progressed rather normally as a child. She walked a little later and her teeth came in later (and all at once) butother than that, her development was pretty normal.2. My life and the life of my family changed DRASTICALLY the day Emily was diagnosed. Your life suddenly gets wrapped around this disease and revolves around daily meds, therapies, doctors, hospitalizations, etc. As she grew, your life transforms itself into a daily "normal" CF routine. CF becomes part of your normal routine. Meds come before meals just like most children might wash their hands or say grace. As Emily has gotten older and more of the CF care has fallen on her, her life has again transformed into what she wants it to be. College life gives her more freedom from Mom & dad and alot of independence to find out who she is with or without the CF.3. My biggest piece of advice to new CF parents is always the same. Although it is a difficult diagnosis to deal with....Don't let it overwhlem you! If you lock your kids in a closet to keep them safe from infection and sick people for them to have a longer lifespan, is that a valuable life to them? Think quality, not quantity!<img src="i/expressions/rose.gif" border="0">
During my pregnancy I had a placental detachment which caused problems for our baby to eat. We went to the dr. 2x's per week for testing and then I was induced because they felt she would do better outside of the womb. As predicted she was a small baby at 3 lbs 14oz.We took her home after 2 weeks and saw a dr every couple of days. She cried a lot, fed a lot, and had a lot of dirty diapers. Slowly the weight gain got smaller and smaller until it stopped. We took her to emergency twice because we felt something was wrong and both times were sent home with a change to her formula. Finally we found a good pediatrician when she was about 4 weeks old. She was anemic and still very small and again we insisted something was wrong. At 6 weeks he agreed to do some blood tests and by then she was labelled failure to thrive. It took almost 2 weeks in hospital to determine that she had CF (sweat test was done).Although she is only 4 we think she has grown up faster than some of her peers because she has experienced so much more. We have kept her out of a daycare situtation, which we would not have done otherwise, but still allowed her to be involved in many outside activities. She will be going to pre-school in Sept for the first time. She only smiled for the first time at 5-6 weeks old, because she was malabsorbing/starving. She cried from the starvation and the stomach pains and I guess never was happy enough to smile. Other than that she has developed like any other. We are told she speaks very well for her age and is intelligent but I think that is because we are honest with her and don't hide anything.My advice to parents would be to take care of themselves as well as their child(ren). I thought that taking care of Ashley and making her my priority was the best thing for her but in the end I failed myself. I went on a burnout and was no good to her at all. I have since learned that I need to take care of myself so that I can take care of her. I also realized that I am her role model and by caring for myself I am teaching her to care for herself.The other thing I learned from her is to be careful what I say. Because of her CF she is small for her age and sometimes people comment on it. I will usually agree that she is "petite" for her age. She is now at the age that she gets upset with me. I realize now that we do not tell people they are fat, nor should we comment on how small they are. I was always small as a child and I forgot how much these comments bothered me. I try and think before I speak now because even if comments are not meant to be harmful, we must consider how the person may feel.Good luck with your assignment.
I don't think CF has altered my child's development (she's 11 now). She is very active in drama, cheerleading, piano, and dance. She makes straight "A"'s in school and has a lot of friends. Our biggest obstacle, to date, has been our family situation. Her father was in denial for so long about her illness. I think partly because she looks so healthy. After years of him being "checked out", I became angry and resentful. It caused our marriage to deteriorate and a nasty divorce followed. My advice would be: (1) Talk to each other about your child's disease. (2) Each of the parents must take an active role in their child's care. Divide up chest PT and take turns picking up medicine. You should both go to checkups, if possible. Or at least take turns going. (3) Be sensitive to your other children's needs. They'll feel left out and neglected if you're not careful. (4) Make your child feel as normal as possible. Don't hide their illness, but not allowing them to do normal things isn't much of a life. (5) Work on your marriage as much as you spend thinking about your child's illness. A good marriage is the best gift you can give your child.Good luck with your course.
Hi, my name is kristen and i have two children with cystic fibrosis.to question #1-my children are small for their age ,they miss alot school,developmentally they are normal.they take lots of medicine,nebulizer treatments,chest physical therapy,tube feedings.it has made me realize to live for today and not to worry about tomorrow until it comes and make the best of the days you have when your kids are able to do normal things because every day is different and you dont know what tomorrow may bring.when you first hear the news that your child has cf you are in shock,denial,and you may even be mad,but remember the days you have are what you make them and for my kids i try to make them the best days they will remember.