Vascular Birthmarks Foundation Forum - View Single Post - Can anyone share LM on neck??
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Old 07-18-2012, 03:59 AM
gardenof-eden gardenof-eden is offline
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Join Date: Jul 2012
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Hi all, my child was diagnosed with cystic hygroma (CH) 3 days after she was born. It was actually picked up by a nurse and my paed decided to go with the wait and see approach. We were then referred to a surgeon when she was 11 months old. Thankfully, her CH didn't grow as fast as others but one could spot it straightaway. So the surgeons sent us off for an MRI.

The first surgeon that we saw highlighted the risk of scloerotherapy and we felt he was a little non-assuring.

We had some medical friends who encouraged us to see a much more experienced surgeon, who was a lot more assuring. He told us that the scans showed that the CH was not near her airways and scoltherapy would be done.

We knew little about OK432 and on the day of our darling daughter's first sclerotherapy, the interventional radiologist (whom we have never met prior) made us sign a form and highlighted the risks such as inserting a trachy for our child if the treatment went wrong. Oblivious to the risks after speaking to the famous 2nd surgeon, we went ahead with the treatment. We were told then OK432 works a charm and we could go home after 2 days of the treatment.

Lo and behold, our child couldn't breathe on the 3rd day when she was in the hospital. Our surgeon (who wasn't part of the sclerotherapy session) evaluated our child and said she could go home if she ate some food. But the interventional radiologist disagreed and called in our paed (whom we haven't seen for 4 months) by then.

PICU specialist was also laid back and said that the reaction my daughter was having towards OK432 is normal.

By the 4th day, our child was struggling SO hard to breathe that our paed made the final call to put our child into PICU. The PICU specialist (from the previous day) was off duty and the one on duty had a look @ our child and instantly made space for her in Intensive Care although it was packed to the brim (since it was winter and many babies/toddlers needed intensive care).

Our child was then put on oxygen life support after ENT painstainkingly found a way to insert the tube down her airway. The tube was stitched to her cheek and it was such a terrible sight to bear. She was also in induced coma while the doctors (ENT and interventional radiologist) made decisions. Communication wasn't fantastic and ENT surgeon wasn't always on duty. She was only working in the hospital on Mon and Fri so we'd to wait 4 days for a decision to be made.

In the end, our child was in induced coma for about 1.5 weeks and she had to have a trachy put in to help her to breathe. ENT surgeon wasn't keen to let her have a speaking valve. She dismissed that our child mustn't have learnt how to speak much so she wouldn't be missing out on much. However, we insisted on trying and thankfully our child proved them wrong.

6 months later, our child's trachy was removed. Thank God!

Also, we got to know another family who had LM when we were in PICU. Seeing another family's child survive a serious case of LM gave us hope. The mum also referred us to Dr Lord in Sydney who gave us a lot of advice, assurance and encouragement. One could tell that he was experienced and knew what he was saying.

Thankfully, our interventional radiologist followed Dr Lord's treatment plan. Our child has had about 3 treatments of doxycycline and it has worked well for her.

Her next treatment is in September. We're still thinking if we should go back to Sydney to get further advice.

Last edited by gardenof-eden : 07-18-2012 at 04:02 AM.
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