Scherrenberg Timms, Harlee James

[left:c61b983f8c]http://www.cherubs-cdh.org/Album/new/timms-harlee2.jpg[/left:c61b983f8c]I was 14 weeks pregnant when we found out that the baby I was carrying had CDH. It was found by coincidence during an ultrasound scan, which was carried out to check the placenta as I had had some bleeding. The doctor was really upset when she told me the news but I don’t think the full impact of what was happening hit me until I went home and looked up CDH on the Internet, found CHERUBS and realised just how serious this was. Our baby had a 50% chance of survival and was in for a very traumatic start to life.

Claude and I decided to try and stay focused and positive during the pregnancy for our own sakes and also for the baby. The amniocentesis showed there were no chromosomal abnormalities and also that we were having a boy. He became known to us as Harlee and I felt very close and protective of him throughout the pregnancy and in many ways didn’t want the pregnancy to end as I knew he was safe and well as long as he stayed inside me.

There was nothing that could really be done for Harlee whilst I was pregnant. I looked into in utero surgery but we decided the risks involved were too great for us to take. We were told it was really a matter of "wait and see" once Harlee was born. I did have a course of steroid injections which were to help the lung growth and many, many ultrasounds, including link ups to other hospitals.

Harlee was born in Townsville on 1st November, 1999. A big boy at 8lb. I was induced because my waters broke the previous day and 5 hours later Harlee was born. I never got to hold him and only saw glimpses of him as the doctors proceeded to bag him and put tubes into him. Harlee was whisked off to Intensive Care and I was whisked off to theatre as I had post partum haemorrhaging and needed to have the placenta manually removed.

I saw Harlee two hours later, connected to machines and monitors and looking very small and fragile. In some ways we were prepared for this as we had been taken through Intensive Care when I was pregnant so that we could see what to expect when our baby was there. Although that was helpful I don’t think anything can really prepare you for seeing your own child surrounded by machines, paralysed by drugs and being so sick and helpless and not being able to do anything at all to help or protect him. Harlee was operated on when he was 5 days old. The operation lasted 2 hours and he did very well considering the extent of the defect. He had a left sided CDH with no diaphragm at all on that side. The stomach, intestines and liver were up in the chest cavity and there was no lung growth on the left hand side, just a bud.

Harlee was on full ventilation as well as nitric oxide and steroids. He was sedated and given muscle relaxants so that he wouldn’t fight the ventilation. Harlee was in hospital for 45 days. His recovery was complicated by two serious bouts of infection but once he was breathing on his own and breast feeding his improvement was dramatic.

We spent every day in hospital with him, talking to him, reading, singing and massaging him. We wanted him to know that we were there for him and that he was safe and loved. The hospital staff were all wonderful, very supportive and understanding. He came home the week before Christmas, which was the best Christmas present we could ever have hoped for.

He is now a happy, healthy little boy, 6 months old with two bottom teeth and is nearly crawling! He has no ongoing problems or health concerns at all and the latest X-ray shows signs of lung growth on the left hand side with very good oxygen sounds on that side meaning it is also functioning lung.

Knowing about the CDH in advance meant that the doctors were prepared at the birth and also meant we could prepare ourselves mentally but it also deprived us of the joy and anticipation that most expectant couples experience. Staying positive and focused during the pregnancy really helped us get through as well as the wonderful support of close friends and also members of CHERUBS. In many ways Harlee has taught us so much about living in the present and enjoying each day we have and never taking each other for granted.


Written by Harlee's mom, Judy Scherrenberg (Austraila)
2000