This is our journey with Digeorge. My name is Sherri,my husband is Billy,we have two boys together,Brady who is 6,Dominic who is 4 my step son who is 11 and my son who is 12. Our family's lives were turned upside down on February 20,2009. We went for our routine 20 week ultrasound and found out our amazing little boy had a heart defect. My OB couldnt tell us what was actually wrong,but they were
going to get us in as soon as possible with Brigham's and Women's in Boston MA and also with the Cardiology team at Children's Hospital Boston. I remember leaving my doctor's office trying to keep it together. As soon as I got to my car I fell apart. I called my husband at work sobbing and asked him if he could come home. The next couple of weeks were a whirlwind of emotions and questions. I was now under the care of Brighams until the day our miracle(Dominic) was born and CHB was already making a plan for the day he was born. The cardiologists at CHB said Dominic had an interrupted aortic arch,VSD,ASD,stenosis of the aorta and was going to need medical intervention as soon as he was born to keep his PDA valve open(it usually closes within 48-72 hours after birth) to keep him alive until surgery. Also that with this heart defect there was a chance he would have DiGeirge Syndrome. While trying to figure out how long we may be at CHB we also had to take care of our other children while we were at the hospital. May 6,2009 at 2:59 AM our amazing 6 pound 17 inch baby boy came into this world. I even got to hold him for a minute(the doctors told me I wouldnt be able to) then the team of nurses,cardiologist,neonatal ect took him away. Billy stayed with him everywhere they took him, Thank god for my husband! I did not get to see Dominic until 6:30 the next morning(that was torture). When I finally got to see him I just cried,how could a beautiful baby have so much wrong. The cardiac surgeon did an MRI on Dominic that morning where they had to sedate him. Dr. Pagula(cardiac surgeon and Dr.Brown(Dominic's cardiologist) came and saw me before DOminic got back to the 7th floor and said Dominic had no thymus gland,which ment he really had no immune system and that that meant He had DiGeorge. I fell apart not only did our baby have to go through heart surgery at 36 hours old,but now he has no immune system. Nothing could have prepared me for what we were walking into next. The nurse said Dominic was back on the floor,when we walked in he was intubated and completely sedated. Again I fell apart. I burried my head in my Billy's chest and cried like a baby. We spent the whole day taking turns holding Dominic knowing that 7:30 the next morning would come quick. The next morning My mom and inlaws came to the hospital to be with us. The doctors all came in and we had to sign all this paperwork that as a parent you hope you never have to sign for your child and we all went into the elevator togehter down to the 3rd floor. The nurse said ok this is as far as the family can go. I couldnt do it,I couldnt say goodbye to this amazing blue eyed little boy. Again THANK GOD for my husband!! the next 6 hours were the longest of our lives. Then the nurse said the surgery is done,Dr.Pagula will be out to talk to you in a minute. We saw him walking down the hall and he looked at us and said the surgery went very well, I started to cry and hugged him. they said we could go up to the 8th floor and they would tell us when we could see our miracle boy. Walking into the CICU was the scariest thing I have ever done. When we saw Dominic and all the tubes and wires and IVs my legs went weak. Dominic was in the CICU for 4 days and then got to go Recovery! Such a stong amazing boy! While in recovery we met with genetics who wanted to test my husband and our other son Brady and step son Anthony for Digeorge. The day we were being discharged genetics came in and told us that all of their tests came back saying they had DiGeoerge. I felt like i was in a nightmare. In 4 months we went from a happy "healthy" family to finding out that 4 out of 6 of us had this syndrome. I couldnt believe what we were hearing. Dominic has it the most severe,then Brady,Anthony and my husband. Dominic has the CHD,immune deficiency,speech delay. Brady has speech and learning disabilities and a short pallet. Anthony has speech and learning disabilities and my husband had learning disabilities and has seizures. The hardest part about this syndrome is the unknown. We wont know mentally if there will be any issues until they hit puberty. While this has been a crazy 4 years I wouldnt change it for anything. Our family has made it through what breaks most and we are stronger for it. My husband does anything and everything for our family and never asks for anything in return. there have benn many hospital stays in the last 4 years and he is my rock. he is the one who everytime they are holding our boys down to give a blood transfusion or draw blood or get boosters or start an iv will look at me and remind me that we are strong enough to get past this. Thank youu William Santarpio,I dont know that we could have done this without you!
