November 3rd, 2019- Emily Newcomb

Emily was born June 9 2012, a normal healthy baby. She weighed 7lb2oz and was 19.5 inches long. At 3 weeks old she started vomiting and red marks started appearing on her skin. At 5 weeks old she was vomiting so bad, she was having all sorts of tests done, barium studies, ultrasound and bloodwork. All came back “”normal””. They put her on special puke proof formula, but she still vomited. At 8 weeks of age her pediatrician told us there’s was nothing more she could do for her and she sent her to the hospital. Emily was admitted and they started a stomach tube to help relieve her bloated abdomen along with a ton of other tests. They told us they didn’t know what was wrong with her that the tests show something wrong with her intestines…maybe???but prepare ourselves for surgery. So the next morning they ambulance transported her to Riley…and so our journey begins. August 2012, 8 weeks old, we arrive at Riley. Our admitting doctor, Dr. West comes into our room and says you want the good news or bad? She tells us Emily won’t be having surgery, but her liver is taking up 75% of her abdomen and compromising all her other organs. She has Hepatichemangiomaendothilioma. (Say that 10 times fast…lol). That is abnormal rapid growing blood vessel tumors. Emily was admitted and we spent a little over 2 weeks at Riley. She came home on 9 different medications that she took every 2 hours. She also could only eat 2oz every 2 hours because her liver was pushing on her tummy. The live tumors made her thyroid not normal, so she was hypothyroid. Emily was in and out of Riley several times over the next few months. In Nov. 2012 I noticed she was changing. Her eyes, forehead and soft spot looked different. I questioned her liver specialist at an appt, and she agreed she had changed. She left us in a room came back and told us our appt. with her was over and that a neurologist was waiting for us to look at Emily. On the way I told Gary this is bad, she knows something, you don’t get into a Riley neurologist in 5 minutes. We went and saw the neurologist and she agreed she didn’t like the way her soft spot or eyes were looking. She sent us to an eye specialist to check for fluid behind Emily’s eye called papadima.  The eye doctor saw fluid behind Emily’s eyes and with us in the room he called the neurologist to report his findings. We went home and waited. In Dec. 2012, she was 6 months old. A few days later on Dec 20th I was at work and I get a phone call from a doctor at Riley. She says, “Hi Mrs. Newcomb my name is Dr. Jodi Smith. Iam a neurosurgeon and I’ve been presented your daughters case and we have formed a team and your daughter will be admitted to Riley tomorrow to prepare her for brain surgery, she has a severe condition called Hydrocephalus. If we don’t help her, she can go blind and die.” My heart sank and I just sank to the floor at my workplace sobbing holding the phone. I couldn’t even talk to the doctor anymore. I had no words, just tears and a sudden onset of fear. I called my husband and family. We packed our bags that night and spent time as a family. We let the girls open one present. We were supposed to be going to meeting Santa for the 1st time but didn’t make it. We drove in the morning to Riley in a terrible blizzard. They took us to our room in the Simon tower and we met with all kinds of doctors and she had a ton of tests done. They told us they will be drilling 2 holes into Emily’s skull and placing bilateral “”brain drains”” and laser leveling a machine to measure the output of the cerebral spinal fluid before they make the decision whether they to need to place a shunt. Surgery went well. They drained a ton of fluid After recovery Emily had a cat scan and then they let me carry her back to our room. I placed her in her bed and Gary walked up to her and he yells at me “what’s wrong with her”. At that point I had no clue because she was just looking at me. Emily went downhill very quickly and began having seizure after seizure, she went code blue on them, they brought in the crash cart and started injecting her with a ton of medicines and intubated her. I can’t even tell you how many nurses and doctors were in that room working on her. There were even nurses up inside her crib with her bagging her with oxygen. The chaplain and social worker arrived also trying to console us as they save our baby girl. They needed to get her to the ICU, they didn’t even hesitate. The nurse stayed in her crib bagging her and off we went, running through the halls to the ICU, they didn’t even take “secret” back hallways as that would have taken longer, they went straight through the main lobby of Simon tower, it was like the parting of the sea and a crazy movie scene. Nurses running ahead yelling at everyone to get out of the way, nurses yelling vitals, doctors yelling what to do and us running helplessly after our daughter. We arrive in ICU and they began hooking her to machines from head to toe. It took Emily 3 days to breath on her own and on Christmas Eve we were released from ICU and headed back up to Simon tower to the brain floor.  We spent our 1st Christmas as a family at Riley with Emily. She was out of it and had not a clue what was happening, but family stuck together. The doctor came in and told us that she was draining to much fluid and that she would need a shunt placed on Dec. 26th. Due to Emily’s large liver and tumors, the doctor had to have a g.i./liver doctor in the operating room with her when they placed her shunt to drain into her abdomen. It was a 5-hour surgery. Emily recovered well and woke up uneventfully this time. We took Emily home on New Year’s Eve. The shunt has been a long road. Emily has had 5 total brain surgeries as the shunt kept failing. There is no cure for hydrocephalus and when a shunt fails, she requires emergency brain surgery.  
In Dec. 2014 Emily began having seizures again and it has been a battle trying to keep her seizure free. She is on several different seizure medicines and still having break through seizures. In July 2015, we just celebrated Emily’s 1-year shunt anniversary of no surgeries. But then 1 day after celebrating Emily got really sick and we took her to the ER. They tell us her liver is highly inflamed for some reason. One of the liver values normal range is around 53 and Emily’s was at 873. So they admitted her and trying to control her pain and talk with her doctors at Riley. The next day we were ambulance transported again to Riley as Riley doctors wanted her in their care because her liver values were off the charts and Emily was not well. They decided it was one of her seizure medicines killing off her liver. They stopped that seizure medicine and the next morning her values dropped by half. We were at Riley for 8 days that visit. While we were there Emily was blessed with the hand foot and mouth virus…ug. Now she is super itchy, and her hands and feet are swollen. Came home with different seizure medicine and on the mend again.  Emily recovered and was doing well. Still having the occasional break through seizures but she is our toddler monster. It’s been a long journey and it’s not over yet. Feb. 2017 we got a diagnosis that Emily has Noonan like syndrome with loose hair anagen (Mazzanti syndrome). It’s a rare genetic disorder and the doctors tell us it only affects about 50 people in the world. There’s no cure for her syndrome. There’s very little research. Having the syndrome diagnosis for Emily will hopefully one day give us answers that we have been searching for and help us guide her into her future. 

Nov. 2017 they have found new research that some people with her syndrome are at risk for Moyamoya disease, abnormal blood vessels in the brain that increase her risk of having a stroke. She had a MRA (angiograph of her brain) done in January 2018, thankfully she does not have moyamoya disease. 

Also in Nov we felt that Emily just hasn’t been herself so the doctor did a bloodwork up and found that her thyroid is messed up again and that her kidneys are not working correctly now.  So back on thyroid medicine! We went and saw a nephrologist and he diagnosed her with Renal acidosis. They are unsure as to why she has this, and she’s been on and off kidney medicine. She has bloodwork drawn every 2 weeks to check values.  

Emily still is battling seizures on a daily basis and she still has the kidney doctor completely stumped. She also has had a busy summer of testing to figure out where her seizures are coming from. They have determined after a MRI, cat scan, 5-day eeg test and another scan with dye that her seizures are coming from her left temperal lobe. We are now in the process to see what can be done to help her. The doctors have informed us that they want to remove the part of Emily’s brain where the seizures are triggering from. We are still in the decision process of this. Emily is also waiting to be matched with a seizure alert dog. 

Emily has a lot going on inside her tiny body, but she is a true inspiration and is happy all the time. We call her our ticking time bomb because 1 day she is fine and in a blink of an eye she’s the sickest little girl and off to Riley we go. 

It’s been an endless journey. Emily has been hospitalized at Riley for about 75 total days and she has had well over 100 outpatient visits. I lost count after 100….  Emily has 12 different doctors.