Make A Child Smile

Ricky's Story
written by mom Rebekah

Thanksgiving, 1995, when I was 33 weeks pregnant with my first child, I noticed that the baby hadn't been kicking as much as before, and the next morning I called the doctor, who had me come into the hospital for a non-stress test and an ultrasound. The ultrasound, showed an abnormality, fluid in the baby's abdomen that wasn't supposed to be there. We were transferred by ambulance to a hospital with a neonatal intensive care unit (NICU). After trialing labor, which did not progress, Richard (we call him Ricky) was born by cesarean on November 26, 1995 at 9:26 a.m., at 6 lb. 3 oz. He wasn't breathing right away and was revived and taken to the NICU while I recovered from the surgery.

The problem with his abdomen turned out to be Meconium Peritonitis, a rupture of the small bowel. He had colostomy surgery right away and another surgery a couple of weeks later to reattach his small bowel. Mucus in the intestine during the surgery suggested a possible diagnosis of Cystic Fibrosis, so a genetic test was done.

When he was about 10 days old the results came back positive for Cystic Fibrosis. Cystic Fibrosis (CF) is a lung and digestive disorder, the most common fatal illness in Caucasians. One in 23 Caucasians is a carrier, and it takes two carriers to make a baby with CF. Each time two carriers have a baby, they have a 25% chance of having a baby with CF, a 50% chance of having a baby who is a carrier, and a 25% chance of having a baby who is totally unaffected. Children with CF commonly have lung problems because of the thick CF mucus which lines their lungs, and cannot digest most fats without the help of digestive enzyme pills. They are also unable to absorb fat-soluble vitamins and thus must take vitamin supplements. Children with CF usually have trouble gaining weight and may end up with a feeding tube to help them in that area. Children with CF are generally mentally normal unless they have a secondary condition. They have to have regular breathing treatments and therapy to loosen the mucus in their lungs. Later testing showed that he also had Gastroesophageal Reflux Disease (GERD), where a child spits up often because of a backup and "reflux" of stomach acid and stomach contents.

We visited Ricky every day in the NICU until he finally came home at 7 weeks old (one day after his due date).

Ricky was sleepy but happy, and drank his disgusting-smelling special formula and took his digestive enzymes willingly, beginning to swallow pills at the age of 10 months old. At five months Ricky had a successful hernia surgery. At 14 months he was hospitalized with respiratory syncytial virus (RSV), a very bad lung virus that boded even worse for Ricky because of his CF. He pulled through fine with no lasting lung damage.

At 23 months old, Ricky's lungs tested positive for Pseudomonas Aeruginosa, a bacteria which is harmless to everyone except immune compromised people and people with CF, who are not able to move the mucus out of their lungs. He was put in the hospital to eradicate the pseudomonas by using IV antibiotics, and spent Thanksgiving and his second birthday (we had a small party for him) in the hospital. But it worked! We rid his lungs of the pseudomonas and he didn't culture it again for several years.

Ricky had a speech delay when he was little. From his 2nd to 3rd birthday he had speech therapy through the county. In 1998 Andrew was born. He carries no CF genes. The boys play together well and are best friends.

Things were okay with Ricky's health until just after his 4th birthday, when he seemed to have almost continuous sinus infections for several months which affected his lungs and made him cough a lot. In February of 2000 he was put in the hospital for 11 days for a "tune-up" to have IV antibiotics and lots of breathing treatments. While he was there he was diagnosed with chronic sinusitis (another possible effect of CF) and the ear, nose and throat doctor (ENT) told us that he needed sinus surgery.

Ricky had sinus surgery in March, and it went well. After that, Ricky felt so different! He became happier, healthier, and more energetic. We were told that he would surely need another sinus surgery within a year, but to date he has not needed another one.

Ricky is usually quite willing to do his breathing treatments, and in 2000 we got a ThAIRapy Vest which hooks up to a compressor and rattles his chest to loosen the mucus.

In the spring of 2000, Ricky was also diagnosed with strabismus and extreme far-sightedness. The strabismus made his left eye go toward the middle a little bit. He used to wear a patch and glasses, but now he just wears glasses. We're happy to say that the glasses have officially corrected his strabismus. The problems with his eyes may or may not be related to being premature, but they have nothing to do with CF.

During another hospitalization in November 2000, Ricky was diagnosed with bronchiectasis, a chronic lung damage syndrome common in people with CF. In kindergarten, Ricky underwent testing for learning and emotional problems and has been in several special day classes since then.

In August 2001, Ricky developed asthma, and it has complicated things quite a bit. Because I have asthma myself, I feel very well prepared to help him deal with it, and we are doing great with it.

In October 2001, the boys' dad and I separated because he was molesting them, and in December 2002 our divorce was final.

Ricky's worst hospitalization yet was in November of 2002, when he was hospitalized for two weeks for a fungal infection in his lungs. During this hospitalization, he was at one point on albuterol treatments continuously for five days.

On September 11, 2004, I married Dave, an RN at the same children's hospital Ricky goes for his CF care. He has been a steady and calming influence on the boys and they have begun to thrive because of it, despite all they have been through.

In 2005, the boys' biological father was convicted of his crimes against them, and thereafter sentenced to 60 years in the state prison without the possibility of parole.

In July 2006, our new baby, Misty, was born. She is in love with the boys and they adore her as well. They dote on her and play with her and we haven't seen a single moment of jealousy.

In the fall of 2006, both boys started playing soccer in a league for the first time. Ricky played with a special league for children with disabilities of various types, and thrived in that environment.

With lots of treatments, including the Vest, we can keep Ricky at baseline. Over the past few years, we've noticed that missing any breathing treatment really does cause him to get sicker. He now also needs to take a special laxative called Miralax because of bowel blockage problems, and if he misses it he becomes quite ill. He is in the hospital 1-2 times per year for lung problems.

Within the past few years, Ricky has been diagnosed with bipolar disorder and is currently on four medications for it, which seem to be helping him a great deal now that we have the proper dosages figured out. (His total number of medications is 25!)

The boys now go to the same school, a public school in a nearby city where Ricky is in a special day class and Andrew is in a mainstream class.

I work part time for the City of San Jose, so I can be home when the boys get home. I support and do fundraising for Cystic Fibrosis Research, Inc.