Lily is the baby who was born with a purple face due to a rare condition involving the ɴᴇʀᴠᴇs of the brain.
A 16-month-old baby girl has been through everything since she was born, as she was diagnosed with a rare sʏɴᴅʀᴏᴍᴇ called Sᴛᴜʀɢᴇ-Wᴇʙᴇʀ. Her mother shared her story to give courage to parents raising children with rare ᴅɪsᴇᴀsᴇs but also to emphasize how much strength her daughter hides inside her.
“Lily was born on December 13, 2020, at 12:15 a.m., at exactly 37 weeks. I had a normal delivery that was very fast. I was only in the delivery room for an hour, and Lily was here. Other than that, she was underweight, but there didn’t seem to be any problem until the doctors saw the color of her face… It was purple! They couldn’t tell if it was a birthmark or if it was due to birth.
A few hours old, and after her first few feeds, Lily began to bring up yellow mucus. The midwives called the doctor to check on Lily. It was by pure luck that just as the doctor arrived at my hospital bedside, Lily was starting to turn blue and was not breathing. This was the moment our journey began. She was only 18 hours old!
She was taken straight to the ɪɴᴛᴇɴsɪᴠᴇ ᴄᴀʀᴇ ᴜɴɪᴛ, stabilized, and then transferred to the ɴᴇᴏɴᴀᴛᴀʟ ᴜɴɪᴛ to be placed in an incubator. They had intubated her, and we were looking at her in sʜᴏᴄᴋ. The doctors explained to us that she had ᴇᴘɪsᴏᴅᴇs ᴏꜰ ᴀᴘɴᴇᴀ. That is, she stopped breathing – something that happened quite often. Soon after, the ᴅɪᴀɢɴᴏsɪs was made.
Lily was diagnosed with a rare condition called Sᴛᴜʀɢᴇ-Wᴇʙᴇʀ sʏɴᴅʀᴏᴍᴇ. It is a sʏɴᴅʀᴏᴍᴇ that forms during pregnancy. This is the case when some of the ɴᴇʀᴠᴇs in the brain do not develop. It is not genetic and is very rare.
I felt the earth disappear under my feet! I was thinking, “Why us?” Why our little girl? Was it something I did while I was pregnant?” Why was she born with a purple face?
Our oldest daughter, who is 5 years old, could not understand why we did not come home with her little sister. When she finally met her, she loved her immediately. They have a very strong bond, and she is loving and protective of her.
Lily was 9 days old when we were finally discharged to go home. Due to the birthmark covering her left eye, she also has ɢʟᴀᴜᴄᴏᴍᴀ. This is a condition where ᴇxᴛʀᴀ ʙʟᴏᴏᴅ ᴠᴇssᴇʟs behind the eye increase the pressure, causing ʙʟᴜʀʀᴇᴅ ᴠɪsɪᴏɴ. She had to be ᴏᴘᴇʀᴀᴛᴇᴅ on twice to improve her vision.
Despite her ɪssᴜᴇs, like not being able to use her right arm, my daughter is a fighter and never gives up! She takes two types of sᴇɪᴢᴜʀᴇ ᴍᴇᴅɪᴄᴀᴛɪᴏɴ twice a day: an ᴀɴᴛɪᴄᴏᴀɢᴜʟᴀɴᴛ to prevent a sᴛʀᴏᴋᴇ later in life and drops to control her eye pressure. She still has to wear a ᴡʀɪsᴛ sᴘʟɪɴᴛ at night on her right arm and special boots for her muscles. She will undergo ʙʀᴀɪɴ sᴜʀɢᴇʀʏ in the future.
Lily will be 16 months old soon and she never stops smiling. She loves playing with all kinds of toys and seems to be developing a bright personality! We’re so proud of everything she’s accomplished so far, and we can’t wait to see her go from strength to strength.”
