This story is about a very rare , very serious disorder called DiGeorge syndrome.
On 10-18-07
Elijah was born weighing in at 3#11oz. & 16 " long. Minutes after his birth, it was discovered that he did not have a pulmonary artery. This is the main artery in your heart! He was med-vac ed to jackson, ms. where he spent the next 33 days on a ventilator. Once he was regulated he was put on portable oxygen and a heart monitor + 7 medications. Soon after that he had a grandmahl seizure which led to the discovery of DiGeorge, also known as 22q deletion. Now, there is a simple test that can be performed BEFORE pregnancy to determine this syndrome. If you are a carrier you should not risk having children. Most DiGeorge babies do not live past 1 year. We were lucky, we had 13mos.& 11 days with our "Beans".
April 14,2008 , we went to Boston ,Mass. to have a pulmonary artery built. The operation was a success,but there were terrible complications and he barely weighed 6 #. After 6 long weeks in boston, we finally came home. Throughout his life, he suffered many complications. After the initial surgery, he was off portable oxygen and breathing on his own, but was on 9 daily meds 4 times a day. He did not have an immune system, hypocalcemia caused seizures,hyperthyroidism caused delayed growth and depleted his strength. He hardly ever left home , except to go to Dr. appts. Still, he was the center of my universe.
Thanksgiving 2008, he was doing very well, had not been sick, and finally weighed 10# 3oz.!
He enjoyed pumpkin pie and cranberries!
Sat. Nov.29,2008, He became adjatated, my daughter, his wonderful mother, called to ask if we could take him to the e.r. because he didn't seem right.
Upon arrival to the e.r. he rapidly deteriorated before our eyes. As his mommy, pa-pa & I held on tight and prayed to God to help him he went into kidney failure from Edema, and within 30 minutes he was gone. My sunshine had burned out . FOREVER.
The e.r. doc said he had never seen anyone taken over by edema so quickly, he said Elijah's arteies had closed up. If he had gotten a heart cath done a week before, he would be alive today.
The heart cath had been scheduled for Dec.4
Please read all you can on DiGeorge before becoming pregnant. And if you are living with a child with this syndrome, I will do anything in my power to help you get the help that you need. We were floundering about in a sea of doctors with little understanding of this horrible syndrome.
My daughter and her husband will not be able to have any other children due to this.
...... We are so lost right now and the pain is so debilitating it is hard to breathe........
