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Dean - A Dream Come True

My name is Dawn Scott and this is our story of how Galactosemia touched our lives. 

It was my 3rd pregnancy, and I'd come to find out we were having our 3rd boy! We were so excited. Our older sons Joseph, 7, and Tyler, 5, were very happy! I felt like I was having my first all over again. I waited 5 years for this pregnancy.

So we went for our routine 5-month ultra sound.  My older 2 had strep throat so I told my husband to stay home with them. We had already found out the sex and that's what I wanted him with me for. Anyway I said how many times have I had an ultra sound... what can go wrong? So I got the ultrasound done and went in to wait for the doctor. He walked in and said "Um, Mrs. Scott, is your husband here?" Immediately I panicked. "No," I said.  He said, "Okay, well we found 2 tumors on the left side of the baby's brain. Now don't worry--it is common.  We just need to do some other tests."

"WHAT!" I went blank - but this is my 3rd child, my other 2 are perfectly healthy! Telling my husband was one of the hardest things I ever did.

On December 31, 2001, (New Year's Eve) I had my amnio. I was told that the baby could have Edward's syndrome, Down syndrome, and other things wrong with him. They said you may want to abort, but if we don't get the results by January 12 we will have to send you out west to abort. It's illegal in New Jersey to terminate after a certain amount of time. I thought no way! This is my baby, I feel him move inside me. People gave us such off the wall advice! Waiting for those results was hell!  

We got the phone call at 7:00 PM on January 14, 2002..."Mrs. Scott the baby is fine." My knees were weak. I thought thank you God, thank you. Although many follow up ultra sounds were done it was determined he only had chorois plestux cyst, which believe me ANYTHING on your child's brain is scary enough. I anticipated his birth desperately. I wanted to hold him and kiss his little head. In the back of our minds we were frightened. What if something was wrong, what if it caused water on the brain.  

When Dean Robert Scott was delivered by C-section on May 2, 2002, the angels sang to us. "He's perfect, Dawn...He's okay," my husband said.  

All I remember is my husband putting his head on my shoulder, both of us paralyzed with fear for this baby. That first look at him was amazing; there he was, our angel, weighing in at a healthy 8ibs. 6oz. and 20 ½ inches long!

Okay, so I was paranoid to begin with Dean. I kept saying there is something wrong with him. Doesn't he look yellow? Why is he so fussy with his bottle? Why did he lose some weight? The answers I got?  "Oh Mrs. Scott you are just very nervous that's all, you went through a lot during your pregnancy, here let's start you off on Zoloft.  You are experiencing post partum depression." - Okay, I was...badly - but the fact remained I knew something was wrong!  The pediatrician said he was jaundiced but not to worry; to watch his weight loss but don't worry. I said he is so fussy when he eats, and the doctor said well he's just a fussy eater. So we went home a couple days later. Once we were home I took him to our regular doctor, and everything was fine he said.

Then we got THE PHONE CALL. "Mrs. Scott, get that baby off his formula right now.  He tested positive for galactosemia!" 

"WHAT! What is that?" I asked. He said in short terms what it meant; I was petrified! Then the doctor asked about seizures.what seizure? No he hasn't had any seizures! Immediately I called our pediatrician, and the other doctor faxed over the info. Our doctor said, "Get him in here now so we can retest him". So we did.

I was told to keep him on the soy formula now until we got these results back. Watch for seizures or anything out of the normal. By this time Dean was almost 1 month old. I did research and thought oh God don't take this baby from us. I watched him like a hawk. I don't think I slept when he slept - I kept my hand on his chest to make sure he was breathing.  

Then we got the results. "Yes, he does have galactosemia.  Bring him to this genetic counselor for more tests." Our heads were spinning. So we did. In the meantime we were told what could be wrong with him, liver damage, brain damage, cataracts, blindness...you name it, they said it. All I could think was what more can happen? How much more poking can this little baby take? We had to wait 2 more weeks for those results - yet another phone call came.  

OH God, he does not have "classic" galactosemia, which is the worst form. FINALLY, good news! Dean has to be on a soy-based diet for a lifetime now--as far as we know. All of the doctors we have seen say it's too risky to try to give him milk after a year. And that's fine. I wouldn't want to cause any more problems for him!  

So our story I guess you can say has a happy ending! We call him "DEAN THE DREAM" or sometimes "soy boy." Every day I look at him and he just melts my heart. This baby is here for a reason. He beat so many obstacles already! My mission in life is now to get the state of New Jersey to have the newborn screening test made available immediately to new parents. Children with galactosemia have less chance of brain damage, liver damage and, at times, death if put on soy immediately. So we are thankful for our DEAN THE DREAM...he is a DREAM COME TRUE!

Sincerely,

Dawn Scott
Written February 2003 by Dawn Scott
Mother of:

Every thing that was wrong in the hospital: jaundice, weight loss, vomiting and diarrhea are all signs of galactosemia.

 

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