Shauna - posted on 08/19/2009 ( 1 mom has responded )
My name is Shauna I am a mother of two kids a boy Mak who is 3yrs and a girl Suni who is 8months.
Nothing was picked up during routine ultrasounds with Suni and when she was born she seemed fine but had what appeared to be a bruise on the left side of her face. Before leaving the hospital we had to see a pediatrician who said that the "bruise" may be a birthmark but we should know over the next 8wks and to just keep an eye on it.
By 3weeks of age the "bruise" had grown and now covered almost half of her face and was preventing her left eye from opening, we obtained a referal from our GP to see an eye specialist at the RCH Melbourne and that is where it all started.
During the appointment with the eye specialist he confirmed that her eye was growing but he would like to monitor it regularly to make sure that it grows properly and refered us to see a skin and birth mark specialist whom we saw on the same day he confirmed that Suni had a Strawberry Haemangioma he organised laser treatment and medication to prevent it from growing any bigger and to help reduce the size. He also wanted to send her for some "routine tests" which were an ultrasound of the heart and an ECG as he explained that around 5% of children who have Strawberry Haemangiomas have heart problems and possibly brain abnormalities. At this point I just got a feeling and I knew deep down even though I tried to remain positive that Suni had a heart problem.
During the ultrasound they dicovered that Sunis heart was very unusual and she had several narrow valves including the auorta I have never seen so many people come into a room to have a look first there was just one and then there ended up being about 15 different doctors in the room. The ultrasound did not show enough detail so an MRI under general anesthetic was organised during the MRI they also scanned her brain which they have said is fine. The MRI gave the cardiologist and surgeon and clearer pricture of what needed to be done to help Suni.
Suni has open heart surgery on 10th June 2009, during the operation they inserted several patches to widen the valves and the auorta and they also moved one valve which was situated at the back of the heart to the front as apparently this is where it is supposed to be.
During the operation Suni suffered with left vocal cord palsy and horners syndrome which means that her voice/cry after the operation and for several weeks was very very soft and you could barely hear her and the left side of her face including the eye had slightly dropped.
Now two months after the operation the left vocal cord palsy and horners syndrome have improved and she now has a very sexy husky voice and the left side of her face has improved also although it is slightly different than before the operation.
Suni has had her follow up appointment and the cardiologist is so pleased with the way the operation went that he has said he doesn't need to see her for 12months which is great because orignally they thought she may have needed several operations.
I thank my lucky stars that I am lucky enough to have two very beautiful children and always remember that there is always someone worse off than me and my family.
Anyways thats my story and I would love to meet other mums in Melbourne or around Australia who also have children with heart problems.