Faith’s Heart Story

Diagnosis: Atrioventricular Septal Defect (AVSD)
At: 25 weeks

I hope that this story comes across as inspirational to those who are going to be going through the same thing. It may seem like a modern day horror story but in the end it all works out for the best and we are so happy to have our beautiful Faith. She is a special little girl and has touched so many lives …. there is nothing greater than having your child make a difference in the world and Faith has already done that in such a sort time. Faith has brought so many together, some to their own faith, and many new friends have been made – she is our miracle.

On my son’s 4th birthday we went for a ultrasound to find out the sex of our baby. We got the great news Its a Girl!! but we also got news that they couldnt get a clear picture of her heart. A follow up ultrasound was scheduled for 25 weeks but we were told not to worry.

The day came for the follow up and while they did it there was silence, and a different doctor was called in…. Then the news came that she had a heart defect and we needed an amnio right then. We were horrified, we didnt want an amnio – no matter what I was so far along and I felt her kicking all the time, we didn’t want the risk. For us not having the baby was never an option, no matter what. We did do the amnio because they said her defect almost always came with down syndrome and other precautions for delivery would be needed. An appointment was made with a pediatric cardiologist in Boston and not being from the area we were clueless if this doctor was going to be good enough for our precious little girl. The week following waiting for the rapid amnio result was terrible, there were days I would just sit up in the middle of the night and sob. My poor son was left with a mother who cried all the time for seeming to him no reason and now he was being juggled from doctor to doctor instead of playdate to playdate. It was just a mess for a while, then the rapid result came back and it was inconclusive because they couldnt tell if the reading was her or me so we had to wait longer. Then the day came that we got the news she didnt have down syndrome, we were so relived but it didn’t change the fact that we had a serious issue to contend with. Our son had always been very healthy so even just the issue if our pediatrician could handle our little girl weighed on our minds. Not quite the happy pregnancy we were expecting. We were helpless and all we could do was pray it would be okay. Nights were spent on how do we explain to our son Michael if things didn’t go well, scheduling family to come for a surgery to help instead of the birth, and more tears than anyone could ever imagine. How could this be happening to us??? I was so healthy, was careful with my pregnancy diet, and wouldn’t dream of putting anything even on my skin that wasn’t good for the baby….. guilt filled me that maybe I had caused this, that somehow I did something wrong.

Countless ultrasounds were done to make sure she was growing and to everyone’s surprise she was – too much. By the ending months they were worried about diabetes because she was coming in over 9lbs on measurements. We were warned that they might have to put her in intensive care after birth and met with the hospitals unit to be comfortable about what might happen. It was all so surreal to us – could this really be happening???

On May 13th Faith was born a healthy 9lbs. She shocked us all and didn’t need to go to pediatric intensive care. I was overjoyed that I could hold her and feed her like a regular baby. It was hard to believe that this perfect looking baby was so sick inside.

We had a month of joy and seeming normalcy in our lives then things started to go bad pretty quick. Faith stopped eating, she was in heart failure and we knew they couldnt operate till she was 3 months and 10lbs. At first we figured how hard would it be to get her to gain 1lb in 3 months —well we found out the hard way!! By June a ng tube was put in, but didnt make the process any easier for her. The medications started, digoxin, lasik, aldectone, raglin, and zantac. Sleep deprivation had a whole new meaning and throw that in with post partum and maternal guilt, I was losing it but I knew I had to keep it together for Faith and my son Michael. Thank God for my husband, you really find out who you married when hit with such a crisis! Our feeding routine was feed every 3 hours for 2 hours, plus she needed to be held upright so she wouldn’t vomit and choke on it. That left me one hour to take care of whatever I needed to do and pay attention to my son. Getting to the three months was really difficult, and that pediatrician that I had meant to switch but never got around to failed terribly. I had no nursing help and was becoming terrified of this little bundle of joy. What if I messed up in my sleep deprivation and gave her the wrong medication?? My husband was going through a huge change at work and he was required to be there although he helped tremendously in her continuous night feeding but combined we got at max 3 hours of sleep for 2 months. Thank God I couldn’t bring her out because driving would have been out of the question! We were blessed with some friends that would watch our son, but he went from being the only child to being a neglicted one overnight.
The dreaded day came, August 5th. We had to hand over our little girl and put her life in the hands of someone we didnt know. The night before we got to remove the ng tube and see what our little girl would look like without the tape and tubes. We both just stayed awake the night and stared at her. That morning we brought her in and they did all the presurgery tests, while we sobbed. The hardest thing I have ever done in my life was hand her to the anesthican – my husband and I stood there holding on to each other for dear life, like if we held on long enough we could wake up and it would be all over. My heart broke at that moment and it was so real to me that I might never see her smile at me again. It was awful but we knew that it was the only chance we had to see that smile again also. Hours and hours went by, 11 hours later we got to see our baby. She was wheeled of the elevator with a dozen people screaming and pushing her into the intensive care unit. It was a sight I will never forget – BUT they said things went well. We were advised that although we wanted to sit by her side all night that it was not good for her. She needed to be in the care of the nurses and doctors thru the night. It was just incredible to see them work, so in sync with each other, we knew they had a lot of work in store for the night. The nurses agreed to call us through the night with updates and we went to the hotel next to the hospital for the night. The next morning we sat and waited, it didnt seem possible that she was going home in a week like they said she would. She had more tubes, and was so swollen. We saw the incision and chocked on our tears over what she had been thru – no one should have to go through that especially a little baby with a whole life ahead of them. Every day for that week we saw our little Faith fight like nothing I had ever seen. We couldn’t believe the improvements she made on a daily basis, every day more tubes came out. We got news she may need a pace maker but we were just so happy she made it we didnt care. Fortunately she fought through that obstacle and they removed the wires. One morning we were told she could leave intensive care and be on the pediatric floor, then the next day she could go HOME!!! It was amazing!! She still had the ng tube and we would have to teach her how to suck all over again, but that was nothing compared to what we all had been through.

One week later after open heart surgery Faith got to come home. The sleepless nights, sobbing and helplessness were finally leaving!! So much of this story is missing because you block it out, but the reality is our little girl is home and doing great! She still has a leaking valve and tachardyia that we will have to deal with when she is older but for now its catch up time. Faith is about 3 months behind in her motor skills, which is strange because her surgery was at 3 months so it is almost like she wasnt born till then. It is hard to not fret over her, and worry about her getting sick but we try really hard to treat her like a regular kid. Her big brother has learned a very valuable lesson on how precious life is and how to be thankful for all the blessings he has. Life right now seems to be heading in the right direction…… it does get better and you do learn how to deal.

A shining moment for us was to do a heart walk in October, 2 months after Faith’s surgery. I still cry when I think back to the joy I felt putting my little girl on the stage with a “survivor” cap on her head….. finally it was a chance we could help in our daughters condition. It is so important that funds are raised to help get the word out, for more research to be done to make these surgeries less invasive, and possibly even prevent some form of CHD from happening.

~Danielle, August 2009