By Amanda, PHACE syndrome, Australia, February 25, 2021
Levi was born with the most perfect little face and smoothest, softest skin, after a few hours we noticed what appeared to be large bruising. Checked over by the paediatric doctor at the hosptial, it was suggested that it was in fact bruising and this said bruise would be gone within a few days. A few days goes by and the "bruising" had gotten darker and started to turn reddish. By 2 weeks old it was very clear that it was something more than a bruise. We went to our local GP, who agreed it was some sort of birthmark, he had not seen anything as large as this and sent us onto a paediatric specialist. By 4 weeks old Levis birthmark had grown very large that it was covering from behind his left ear, on his ear, across his cheek and jaw line, under his chin, on his lip, and then a few little ones on the other cheek were appearing. We finally got into his Specialist that we had been referred to see, who spent 10 minutes with Levi and advised us to do nothing, that it would go darker but then go away. It saddens me that this is the advice I was given & I took it for gospel. I became very defensive and protective of my beautiful baby boy with these dark & large facial Hemangiomas. I hated anyone giving me advise on getting it lazered or the fact that it was "so big", "looking darker" etc.
Levis Hemangioma was growing rapidly, i noticed spots in his mouth and on his tongue, it started to rise in areas and go very dark red, sometimes purple. My poor baby, this hemangioma was taking up a good portion of the lower half of his face.
By 6 weeks old, Levi became extremely unsettled, he was not sleeping, and crying 90% of the time. I knew something was not right, and I knew it had to be due to his birthmark, however my advice only a few weeks earlier was that it was fine and would start to disappear. Our GP thought he may have bad reflux and put him on reflux medication, this did nothing but make him scream for 5 days/nights straight, I was advised to continue with the reflux medication for 2 weeks. At this point levis hemangioma began to go dry and flakey and started to look infected (ulcerating however I didn't realise this could happen) I took him back to said GP, who placed him on antibiotics. After another 3 days of screaming and just as many doctors appointments, I took my completely miserable, unsettled, sore precious baby to the ER at the Woman's and Children's Hospital.
We waiting a whole 15 mins before we were called in, the doctors there took 1 look at him and admitted him. The next few days were full of MRIs, Eco, ENT, Eye test, Ultrasounds and many groups of specialist coming around to "view" my beautiful boy. They immediately stopped his reflux medication, the antibiotics and administered a cream for his ulcerations and strong painkillers. On day 5 of being in the hosptial, Levis ulcerations had gotten larger and opened in new areas, my darling boy was in so much pain, it was heartbreaking. By Day 10 in the hosptial they advised us Levi has PHACE syndrome with the large infantile hemangiomas visible on the outside but also in his mouth and down his throat and also torturous Blood Vessels and Arteries, to and from his brain.
At this point there was relief and also fear of the unknown.
Our Dermatology team along with guidance from the head Paediatric Doctors decided to put Levi on propranolol, a few days of monitoring and adjusting the dose and he was set.
The Nurologist team advised Levi needed to be on Asprin to help manage and prevent any clots that could easily form in the vessels & arteries. We stayed a total of 14 nights in the hosptial, the Nurses and Doctors were amazingly supportive and informative and on day 15 we were able to take out sweet baby home.
The next 6 months from the diagnosis had involved fortnightly - monthly Follow up Hospital appointments, management of his dry skin and ulcerations on the Hemangioma, Many Increases and adjustments to his medication.
Many comments from strangers and many hours spent explaining levis PHACE syndrome.
At almost 9 months old Levis Hemangioma has basically disappeared besides the capillary type veins that will more than likely remain.
He will have another MRI at 12 months old to review his Vessels and Aretry.
My little PHACE warrior is brave, strong and oh so handsome. He has been through more in his little life than a lot of adults.
This was the scariest time as a mother, Levi has reached all milestones as expected and is a happy bubbly baby.