Sophia Marie Castillo Story
Sharing our story: Mom and daughter born with CHD
We were so happy, after 10 years of marriage we were going to be parents. I shared the news with family and friends late January 2006 I remember the day to it was on my parent’s birthday I recall calling them both to share the news. We knew it was the right time we had no reservations about it; we were ready to become parents. When I first found out I was pregnant I told my OB that I had heart surgery when I was 4 years old to repair a Coarchtation of the Aorta. So when I was 20 weeks pregnant my OB wanted me to have a fetal echo to rule out any heart issues with our daughter. I set up an appointment at Stanford to rule out any problems. I decided that this was just a routine appointment and went on my own.
The doctor’s diagnosed baby Sophia with Tetralogy of Fallot, Pulmonary Artesia and Multiple Aortic Collateral Arteries, It's hard to imagine, waiting nine months for the arrival of our daughter and not knowing what the outcome would be. Sophia Marie Castillo was born September 19, 2006 at 4:14a.m. at Lucile Packard Children's Hospital at Stanford via c-section. She was 6 lbs 4oz and was 17 1/4" long and looked wonderful. At first she was doing just fine breathing on her own, but after an hour it was apparent that she needed a little support. At 10 tens old she required her first operation an AP Window to help her arteries grow. We hoped that she would be home in a week or two but we ended up staying a total of 6 weeks. Sophia had a bad sternal wound infection that required 15 days of IV antibiotices. Upon our anticipated day of discharge their was talk amongst the doctors that she should remain on the antibiotics for an additional week in the hospital. I was so sad that we would have to stay, so I spoke up and ended up getting her doctor to agree to oral antibiotics at home. Imagine waiting 6 weeks to take baby home. I was nervous and excited, I don't think I slept for a week after she was home. Sophia on the other hand was at peace in her new surrounding and slept so well that I worried. She had issues with reflux but with tweaks to the reglan and zantac she got better and gradually gained weight.
At 8 months old they decided she would undergo a 2nd operation, a Unifocalization surgery as wells as a BT Shunt placement to allow her collateral arteries grow, it was determined after her 6th month check up that the AP window was not allowing the arteries to grow out enough they decided that they needed to try something else. Sophia went in for surgery on the friday of memorial weekend 2007 the hospital was very quiet, we waited 10+ hours before we were finally able to see her, the tubes and the machines were more than I could. I broke down I just hated that my baby girl, whom I have bounded with and love so much was laying in the bed so still. I prayed that she would recover quickly so we could get home home. After 7 days in the CVICU she was moved upstairs, we stayed on 3-west for an additional 4 days and were home in time for the weekend. I was so exauhsted from lack of sleep, going home and sleeping in my bed and taking a long bath was bliss. Sophia recovered really quickly and was back to her routine in a week.
After many doctor’s visits and another Heart Caths they determined that Sophia would need to have a left side Unifocal revision to open up her arteries. We would spent 2 months in the hospital waiting for her to recover; she had to have her drainage tubes in longer due to from Chylothorx infection and issues with reflux. The doctors were able to get her on the right combo of medication to finally get her home. Once we got home we had to deal with tapering her off of her medicine, she had really bad drug withdrawals and keeping track of 11 medication daily all at different intervals. She was back to her routine in about two weeks. When Sophia was 24 months she was scheduled for another heart cath Surgery #4 for a Unifocal revision on her right side, this time they had to do a sternatomy to gain better access to her right pulmonary arteries. Dr. Hanley hoped that this operation would get the arteries to open up so that she would not need another revision in 6 more months. Sophia went in for surgery on a wednesday, by friday they were extabating her and by sunday we were moved upstairs. Monday morning we were checking out and heading back home. We were surprised that she recovered from her surgery in less than 6 days. We were home one week before thanksgiving; it was truly something to be thankful for. Some very helpful advice we received from our Nurse Practitioner at the hospital on her 3rd surgery upon discharge was to give Sophie DuoNeb and Pulmicort Breathing treatments once a day two weeks prior to her surgery, the therory behind this, this would allow her lungs to remain open and clear so that she would recover quicker from surgery. We did this as the suggested just before her 4th surgery and it worked, she was off the vent in 3 days and home in 3.
Sophia was scheduled for August 5th 2009 for her complete repair. We again packed our bags and drove to Palo Alto for what we all were praying for, a complete repair. After a long day of pre-op they were convinced that Sophia was strong enough and big enough to under go a patch to her VSD, a partial unifocalization to her right upper lobe and that they could put in a donor pulmonary valve for her as well as put in a condit in her heart. Dr. Hanley did not think that surgery would last all day, although he wasn't sure but was hopeful.
The day of the surgery was on of the hardest for me to prepare for, Sophia was older now and much more aware of what they were doing. I can recall the nurse saying its time, I immediately broke down in tears, she was holding me around the neck very tight and wouldn't let go, I kept hearing them say we will take very good care of her. At last she let go and I walked down the long hall to the waiting area sobbing. I saw my father standing at the door waiting as he gave me the biggest hug. I just felt so anxious letting her go, I had so much nervous energy that I started pacing around until my mother took my hand gave me a hug and said were all together and we will get through this. That was the longest 13 hours of my life I don't know how I managed to keep my head on.
Dr. Hanely came out around 5p.m. to talk to us, he came in very calm and smiled to us and said "she is doing great and is breathing at 100% oxygen." He told us that they were able to fix everything, she was now nice and pink and should make a complete recoverey in two weeks. We were besides ourselves with anticipation that I cried the biggest tears of joy and thanked Dr. Hanley for not giving up on her and forging ahead until they could fix it all. Sophia remained in the CVICU for 2 days on the ventilator. Pro-op day three her right lung collapsed so they put her on bipap to help get better oxygen flow to her lungs and keep them open. After a day or two she was great, they rotated between bipap and high flow machine for several days until they could have her on room air and comfortable. She stayed in the CVICU for 9 days and were planning to move her upstairs to 3west but to our surprise the doctors in the CVICU decided that she was doing so well that she could be discharged from the hospital and go home. We would have to return in a week for follow up in the heart center but at least she would be able to go home and sleep in her own bed.
Sophia's last surgery was almost 7-months ago, made a full recovery and celebrated her 3rd birthday on September 19th. She started taking basic gymnastic lessons, and although it makes me nervous to see her tumble the teachers are very gentle with her and she loves it. She is signed up to go to swim lessons in a month. To say hose three years were not very trying times for our family would not be adequate. We believe that she taught us to be patient and better parents for what we went through with her and cherish each and every moment with our little sweetie.
Sophia will need to have a pulmonary valve replacement surgery when she is older but for now we are just enjoying a break from the hospital.
To view more Photos of Sophie visit: http://acasti2850.smugmug.com/
See her gallery for new pictures.
Congenital Heart Defect Awareness Week™ February 7-14, 200
To View Sophia's Care page please click here http://tchin.org/portraits/sophia-1.htm-1.htm
Great online resources:
In the News:
About Cardiac Surgery