Price, Sydney

[left:c829eaf1a0]http://www.cherubs-cdh.org/Album/new/price-sydney.jpg[/left:c829eaf1a0]We were so grateful to learn of Cherubs and all of your dedication to this devastating disease. I’m finally getting to this letter. We have a very precious daughter, Sydney, who will be three on September 27. This being our first and very wanted pregnancy, we were a bit nervous. I had a threatened miscarriage at about six to eight weeks. At 19 weeks during a routine ultrasound, my doctor told us there was a serious complication and referred us to a high level ultrasound specialist in Chicago at Northwestern University. Thankfully, we live only about 45 minutes away. That same day we were given the news of a left CDH. We had never heard of this condition and were completely in shock. We were urged to have amnio done the following day in case there was also a chromosome defect. That was a very trying time, waiting a few weeks for those results! The amnio came back normal and confirmed that we were having a daughter. My pregnancy was tedious, and I do wonder if simply the stress of waiting for this child to arrive could have caused pre-term labor. My OB visits were then done at Northwestern (Prentice Women’s Hopsital). At 30 weeks, pre-term labor began with constant contractions. However, being my first pregnancy, I was unaware of what was really happening. One doctor said it was simply "Braxton-Hicks". He was very wrong. At 34 weeks I was dilated and on strict bedrest. Mag sulfate didn’t even help. We were quite grateful to reach 36 and a half weeks before Sydney arrived. She was intubated immediately, assessed and within two hours was sent to Children’s Memorial, as planned. During the weeks prior to her birth, we were able to meet her surgeon and neonatalogist with all of our many questions. Sydney was stable and the next day (20 hours old) her hernia was repaired with a Gore-tex patch. That night proved to be difficult, as she struggled with "fetal circulation". She responded very well to Nitric Oxide and did not need to be placed on ECMO. She was on the ventilator for 19 days and we were finally able to hold her when she was taken off. At 34 days we took her home on the NG tube (lasted about a month) and on one fourth liter oxygen (lasted four and a half months). Sydney has never been a great eater, but manages to always hold her own. We always knew she would need a ventral hernia repair at about 18 months. During the initial repair, the abdominal muscle is purposely left open in order to accommodate the organs. The surgeon then needs to go back to close the muscle. During an ECHO prior to surgery, the cardiologist found mild swelling of the right ventricle, apparently due to the still developing left lung. The heart works overtime to compensate. So we had to put Sydney back on oxygen (nights only) to basically aid her heat. Her repair surgery was put on hold until this issue was resolved. This took about eight months and two ECHO’s. Finally, Sydney had her ventral hernia repaired in July by the same surgeon. She again did so well and was very brave and tolerant. People are often amazed at her patience and tolerance. We are sure it is due to having withstood so much these past three years and we are so very proud. She has surely taught so many about adversity and forced people to look at what is really important---good health, given by God. I am afraid I have rattled on, but must mention the extreme importance of hearing tests for all babies who have spent time in ICU. Our doctors insisted on hearing test follow-ups every six months. Sydney did suffer hearing loss as a result, we are told, of a powerful combination of antibiotics, diuretics and the ventilator. We were sad to learn of this, however, she is progressing wonderfully. She has moderate to severe bilateral hearing loss and has worn hearing aids for over two years now. After extensive research we chose to enroll Sydney in auditory/verbal therapy once a week. We have seen a wonderful therapist since she was 11 months old and we are so grateful we did, because she is talking like crazy! Early intervention is definitely the key to working with hearing impaired children. We simply talk all the time at home and give her as much language stimulation as possible each day. I continue to pray for all the families who have to go through such an ordeal. We are always available to talk with anyone who needs to share their hope or grief.


Written by Sydney's mom, Cathy Price (Florida)
1997