Tuesday, May 3, 2011

May is Cystic Fibrosis Awareness Month

Cystic Fibrosis Image
I've been reading some other cf blogs where people are posting how they were diagnosed with cf or how their children were.  So I will also do that here.  Our daughter Katrina was 3 1/2 years old when she was diagnosed, but let me take you back to the beginning.

When I was four months pregnant with Katrina I started to bleed.  This probably has no connection to cf, but I can tell you that at that moment in time I was so scared of losing her.  I called the doctor who told me that I was too far along for a miscarriage (but I know now that he lied) and to take it easy, get off my feet.  He also scheduled me for a sonogram (and back in those days sonograms were only done during an emergency).  The results were that they could not find the reason for the bleeding.  So I went home and laid around the house for a couple of days and the bleeding did stop.  Did I say how scared I was?

Then seven days after my due date dh and I had just gone to bed when I had a huge contraction...right out of nowhere.  I told dh that I thought I had a contraction and he rolled over and said you better get some sleep because it's gonna be a long night.  (Jerk!)  Easy for him to say, right?  Cutting to the chase here, it ended up that I had back labor (I wouldn't wish that on anyone!!); I couldn't sit, stand or lay down and I went three times to labor and delivery at the hospital.  Because I wasn't dilating they sent me home.  The third time I told them I wasn't leaving until the baby was born because it was getting ridiculous.  I was in labor for 36 hours.  Screaming pain labor.  No sleep during any of it, either.

Katrina was declared a healthy baby and we brought her home three days later.  I made an appointment with a pediatrician for her check-up and shots.  During the course of all this Katrina ended up being a 'failure to thrive' baby.  I'm a new mom so I'm asking the doctor questions and he puts me off like I'm stupid.  But, he put Katrina on a banana formula called Probana.  It was made by Mead Johnson and let me tell ya Katrina started gaining weight on that stuff.  But she did have a lot of projectile vomiting and unformed stools.  She sweated a lot and tasted salty.  She had eczema on her head.  Doctor gave me some topical cream for it and it went away.  However, I did not like the pediatrician.  I wanted to find a new one.  Dh was a heating/ac service man so he knew of a pediatrician he thought I would like because he worked on his a/c and heating and had watched him deal with other patients.  I made an appointment with him and I just loved him.  He was like an old country doctor, very kind and listened to me.  He was one of a kind, that's for sure. 

Well, I complained to my mom how Katrina tasted salty and she was failure to thrive and slowly my mom started putting things together.  See, she had a friend who's daughter passed away from cystic fibrosis and she knew some of the symptoms.  I put the thought of her having cf off because when I looked into cystic fibrosis and learned it was a fatal disease I'm like there's no way we could have a child with a fatal disease...that's crazy!  In the meantime, Katrina failed to talk and her motor skills weren't developing properly and that worried me.  We had a developmental teacher come to the house to work with Katrina.  Once we put her in nursery school she just bloomed!  People couldn't believe the difference in her because she started talking and her skills got better and better.  Once, when she was around two years old she got pneumonia.  The doctor put her on antibiotics which cleared it up and we didn't think too much about it.  Then at around three years old she had a rectum prolapse.  This is when the inside of the rectum will actually come of the body.  I called the doctor and he said sometimes in children that will happen because they strain too much.  Well, my mother's heart told me that wasn't the case here.  Then Katrina started to complain her tummy hurt.  It was constant, non stop.  We would run her to Children's hospital every single night for two weeks.  The doctors there first told us it was because she had parasites.  Then they told us it was because Katrina just wanted attention.  It was so maddening when, as a mother, you know something is wrong with your child and nobody will listen to you. 

Then one day, I  left Katrina and her brother (we had a son when Katrina was 16 mos old) next door while I ran some errands.  When I came to pick them up the neighbor was saying she was watching a Phil Donahue show and they had teenagers on there that had cystic fibrosis.  (There's that word again.)  And she described the symptoms they had.  Also, during this time Frank Deford the sportswriter, wrote a book about his six year old daughter who died from cf and he was on many tv shows promoting his book and talking about his daughter Alex.  So with all this and after talking to my neighbor, I immediately came home and called the pediatrician to schedule a test for Katrina.  My pediatrician did not think she had cystic fibrosis.  He even told me so.  She didn't really have symptoms that he saw, but he went with me on it and I went to the hospital with Katrina to have the test done.  Unfortunately, the hospital was having trouble with their sweat test probes and the results came out as borderline.  I said that was stupid, how can you have a borderline disease.  The pediatrician scheduled a sweat test for Children's Hospital and that test came out borderline, too.  We had Katrinia tested four more times, but eventually we knew she had the disease.  Children's Hospital wanted to put in the hospital asap.  So we went to another hospital where the doctor was more laid back and we felt that was where we should be. 

We contacted the CFF and they sent us information about the disease, but reading that cf is a fatal disease and that your child is eventually going to die before she reaches adulthood is just way too much to comprehend.  I can honestly say that I mourned Katrina's death at that time; on the one hand having to come to terms that my child would die before she was 20, but on the other hand not even believing it was possible. 

There were times when I would be so overwhelmed with the thought of losing her I would go into her room while she was asleep and cradle her in my arms and cry and cry.  I can only imagine what she must have thought, though she never asked me why I was crying.  I started buying her little things that I never would have thought to buy  because I didn't want to spoil her, but I thought, what if I could never buy things for her later in life because she wouldn't be with us. 

Eventually, Katrina had to be hospitalized when she was six years old.  At first it was once a year, but near the end of her life she was hospitalized every six weeks.  And then the end of her life came.  And we watched our baby girl take her last breath at age 12. 

Having a child suffer and die is the last thing I would wish on my worst enemy.  It devastates a family.  You are never, ever the same again.  Life has changed. 

One in 30 people carry a cf gene.  If two people that are carriers marry they have a one in four chance of having a child with cystic fibrosis.  You'd be surprised how many people are carriers of cf and don't know it.

So this is how Katrina was diagnosed with cf.  One day I pray there will be a cure, but since it's a genetic mutation problem I just don't see how researchers will ever 'fix' it.  But there's always, hope, right?

No comments:

Post a Comment