Born June 2nd, 1999
My name is Toni. I am the mother of three children. During my third pregnancy I thought something was wrong, I could not get that out my head. I had never had morning sickness, or anemia, or headaches but during my third pregnancy I had headaches, anemia and morning noon and night sickness. I carried full term and on June 2 1999 my husband John and I had a healthy 8 pound 3 ounce little boy we named Ryan. Within twenty four hours Ryan developed Jaundice, which my second child had been born with as well so I was not too worried and figured this was the fiend behind my torturous pregnancy. We took Ryan home three days
During the next eight months I took Ryan to his pediatrician who was new to us since our older wiser and much better doctor had passed away due to old age, and at each appointment I kept referring to the size of his head. At the same time Ryans new born screening test came back abnormal for galactose, The doctor had him re-tested it came back abnormal and she diagnosed him with a the genetic disorder alactosemia. I was told to quit breast feeding or it could kill him and only feed him certain foods. But Ryans head kept getting bigger. The doctor attributed the enlargement to the galactosemia. I searched the WWW and found that one had nothing to do with the other. Ryan was 8 months old when this fact came to light- His head was 59 1/2 Cm.
Luckily. very luckily a friend told me about Childrens Hospital Of the Kings Daughters here in Virginia (only 30 minutes away from me). I had no insurance and I called up there to talk to a geneticist named Dr. Virginia Proud. I told her I had no money nor Insurance and about Ryans head. She told me “Forget about the money it is a non-issue here. We will talk about that after we treat your son.” I got an appointment for the next day.
February 11th 2000
John and I took Ryan to CHKD for a 9am appointment with Dr. Proud. At 9:30 am our lives changed. She said “This child has a tumor or an aneurysm, not Galactosemia.” We were sent to radiology and there in that small confined room with twenty or so medical students watching I looked at my son while the Doctor held a Doppler Ultrasound against his head and said “Sir-Mrs. Moreland, Your son has an aneurysm-and Its location makes treatment extremely difficult” before the words had finished coming out of his mouth I passed out. I woke up an hour or so later. My husband sitting next to me crying. We went home at 9:30 PM that night with an appointment to talk to a specialist the next day at 9am. I cried myself to sleep on the floor of my husbands work van on the drive home that night.
February 12th 2000
We took Ryan back to CHKD and were introduced to Dr. John Agola. An Interventional Neuro- Radiologist. He told us that after looking at the scans and x-rays and all the information accumulated the previous day that our son has what is called the Vein of Galen Malformation and Hydrocephalus. It was located in the middle of the brain and would require a very long procedure. The embolization. He explained the procedure, told us the risks,as well as the alternatives, and said we had two days to think on it. We went through many more tests and ended up leaving the hospital at 9 pm that night. I cried myself to sleep on the floor of my husbands van again.
February 13th 2000
call the doctor- say OK. make appointment to come to hospital for surgery next day.
February 14th 2000
Sit at hospital all day and watch nurses get angry at me because they cant get an IV into my son so I am yelling at them to stop. Iv therapy comes in and gets it one shot. MOMS NEW RULE- one shot trying to get IV. Then call IV therapy. Face sleeping on horrible plastic configuration called couch-bed or sitting in rocker holding Ryan and singing “All of me” and “you are my sunshine” to him all night. I didn’t get a wink of sleep and my mouth was dry ion the morning from all the kisses I gave him during the night-or it could have been all the crying.
February 15th 2000
Surgery Day. Ryan rolled over to the hospital next door where the surgery will be performed. Doctor telling us he will do his best. Watch husband fall apart and kiss Ryan as he tells him soo softly to “please come back to me” I smile Ryan smiles back. I give him his favorite toy and kiss his forehead and feel my heart break. which until this point in my 24 years of life I didn’t know you could actually feel your heart break.. You can. 10 hours later, many many cigarettes, guilt trip after guilt trip ( for what I had no clue) after guilt trip and one more for the road, Dr. Agola came out and gave us the thumbs up sign and said they would be wheeling Ryan by quickly as they took him to PICU back at CHKD and we could run behind him.- We ran ahead of him. And waited until they let us in. He woke up ten minutes later and said WA-WA (his word for cup) I laughed and cried at the same time. During the next two weeks I never left the hospital with the exception of an hour when I think the nurses conspired and called my husband to remove me from the premises. I left but was adamant about getting back quickly.. I won. Declaring bankruptcy from the hospital (special regard given us by the judge). We went home with Ryan on a heart monitor.
April 19th 2000
Ryan has a programmable shunt placed by our neurosurgeon Dr. Petra Gurtner.
April 21st 2000
we leave the hospital.
we start Physical, Occupational, and Speech
therapy. Ryan turns 1.
Ryan has become so advanced in his speech he continues only with Physical and Occupational
therapy to this day.
Ryan takes his first steps. We are visiting my husband in Berkeley California where he has moved to (in April) to make more money and a better life for us.
Ryan develops Subdural Hygromas after having his taur flow lowered to a setting of 30. This shows up on a cat scan ( we have had over fifty cat scans)
March 18th 2003
Ryan falls on the concrete and scares me with a huge bump on his forehead so I take him to ER in area. They tell me they can see no Hygromas. I know they were there six months ago.
April 4th 2003
In confirmation with local ER Dr. Agola says Hygromas are gone. He has become a friend over these years and we talk in his lobby not his office while he plays with Ryan pretending he is not examining him at the
same time. Ryan loves him and his great big bear hugs he gives. My husband and I love him for things that no matter what I type here words wont express. Today-I find hope in this web site, that I am no longer alone. Ryan is no longer the only one. My son knows what he has and can tell any doctor. Ryan is not special for having something so rare. He is special for his smile, his big words, the compassion he has when the world is too big for even me, the tears he sheds for the babies he hears crying when he visits the hospital, the free kisses he doles out to his dad, brother and sister and grammy, his new songs he sings to me, and the fact that he knows a great bear hug when he gets one. Dr. John Agola regardless of what he believes his role has been in Ryans life has changed us forever. He inspired me to go to medical school. The fact that he took time to come check in on Ryan at CHKD while his family was sitting in the car downstairs waiting to start their vacation did not go unnoticed. He has been that one undying light that we know will forever bring the ship home safely. Through this story I want not only to celebrate Ryan and his life but to appreciate the fact that this man cared more about my son beginning in the first 10 minutes we met him over the course of the past three years than I saw some parents care for their dying children in PICU while we were there.
* Dr. Agolas invited to Ryans tenth birthday when it
-Shine on Dr. Agola. Ryan will gain more of wattage
output for having you a apart of his life.
Mother of Ryan- Survivor.