October 20 - Dear Nicholas Sparks (Guest Blogger Judy Ginns)

Dear Mr. Sparks,

Hi my name is Judy and I am the mother of Hayley who is 16 years old, and a survivor of CDH. Hayley was born on 30th May 1984 at 6.10am in the morning. She was 6 lb 15 oz. I dreamt two weeks before she was born she would be born with an abnormality, and I was not surprised when she was. Mother's intuition they say! Hayley was born in one and a half hours, blue and quite lifeless. They took her off to the nursery and put her in an incubator on oxygen, hoping she would start breathing on her own. When her condition deteriorated soon after, the paediatrician was called in. Hayley was intubated, and a retrieval team was called in from a city hospital. They told us the prognosis did not look good, as they thought she had a large diaphragmatic hernia. I did not have any idea what that was, so my husband and I could only be guided by what they told us. That day was such a blur, driving to the city just hours after I had this beautiful baby, not knowing what would happen next. Hayley was taken to surgery when she was just 8hrs old. They repaired her left sided defect, and pulled her stomach and intestines down into place. She also had a large pericardial cyst around her heart, so they drained a little of that and used the tissue to repair her diaphragm. She was returned to ICU and remained on a ventilator. Her oxygen sats did not improve and her x-rays still showed large amounts of liver in her right chest. Her lung thankfully had expanded a little on the right side. She battled on through the next 6 days, having good and bad days. ON day 7 they decided to operate again. This time they removed two ribs on the right side and pushed the liver down, removed more of the cyst from the heart, and repaired the right side. Hayley also had a defect in the middle of her diaphragm, which was not able to be repaired. She was sent back to ICU still on a ventilator with the "wait and see" attitude. Hayley had a chest drain, which became infected 2 days later which did cause some concern, but she overcame that, and a bad bleed from her umbilical drip and she came through that also. Hayley just kept improving to everybody's amazement, and after 6 weeks she came home. What a nightmare that was with feeding! It would take her about 1 hour to feed from me and then she would vomit the whole lot again, just in time for next feed. After 3 days she stopped feeding all together and went a terrible grey colour. I took her to the paediatrician, and he put her in ICU with pneumonia. Her hospital stays were always long and frequent in the first year. Just one chest infection after another, and her reflux was so bad, I didn't think she would ever .get well. When she wasn't in hospital I would have to do physiotherapy three times a day and thread a suction tube down her nose into her chest to suck her lungs out, to try and stop the infections. It seemed her underdeveloped lungs were not coping with the stress. At 1 yr old she only weighed 7.5 kgs.. Hayley didn't walk until she was 22 months old, and when she started to walk her health also started to improve. She still had hiccups along the way, but the next years seemed to sail through for her. It is funny,. but bronchial pneumonia, chronic asthma, RSV infections, bronchillitis, chronic reflux, etc seemed to be just run of the mill illnesses to our family, were unheard of to my friends, and their children. Hayley is now sixteen, still tiny, weighing just 40kgs, and surprisingly very healthy. She still has an anterior diaphragmatic hernia in the middle of her diaphragm where her left lobe of her liver sits up through it. She still has a small pericardial cyst around her heart, and her heart is rotated. But besides that she is normal!! They will not attempt to repair the abnormality at this stage as it is not causing any problems, but they will keep a close eye on it, and having children of her own may not be possible, but we will cross that bridge when we come to it. So for a little girl who they said on many occasions would not live she certainly did prove them wrong.

Sincerely,
Hayley's mom, Judy Ginns (Australia)