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I became pregnant with Gabrielle Sofia at the end of February. She was due November 27th. Because she was measuring quite small, I had routine ultra-sounds every second week in November to track her growth. On November 30th, we went in for one of these routine ultra-sounds and the technician detected a hole between the left and right ventricles of the heart. This was probably my 5th or 6th ultra-sound but it was the first one that anyone had noticed anything abnormal in the heart.

A couple days later, we had an appointment with the pediatric cardiologist, Dr. Sinclair, and he confirmed that the baby had Tetralogy of Fallot. This is a condition where there are 4 problems with the heart. The heart has a defect where the body pumps oxygenated and de-oxygenated blood back through the body. This causes babies to have “tet spells” or blue spells where they go blue as they lose the oxygen saturation levels in their blood. We were told that there would be a repairative surgery when she was 4-8 months old.

There was a chance that she would have to have surgery immediately after birth, depending on how she was breathing. This surgery would be a shunt to help her get more blood to her lungs to oxygenate the blood better.

She did not have to have this surgery at birth. Gabrielle Sofia was born on December 9th, 2010. When she was 4 weeks old, we went for a routine check up with the cardiologist to check her oxygen saturation levels. Most people sit at 99-100% saturation. Usually she sat at 92% saturation, but they were willing to have her go as low as 80% before they would be concerned. On January 5th, she was all over the map on the routine check up. She went down as low as 30%, though she also went as high as 94%. The cardiologist decided it was time to get her a shunt.

A few days later, we were in Vancouver preparing for heart surgery. Gabrielle had her heart surgery where they installed a BT Shunt on January 11th. Initially she seemed to recover very well. We saw in her in the Children’s Hospital ICU that evening and she only had a few IV’s and nose prongs, though we’d been warned she may be on a breathing machine and have a catheter and a tube into her stomach. We were very pleased. The next day she was eating and we were transferred up to the regular ward and out of ICU. The docs were making promises that we could go home the very next day, 2 days after heart surgery.

On January 12th, at 9pm, we saw the first signs of complication from the surgery. In the next couple hours, Gabrielle went from looking like quite a healthy recovering little baby to dying as her heart failed. They rushed her back down to ICU and resuscitated her. We were discharged from the hospital 7 days after the initial surgery.

A “tet” heart can be fully repaired but the child has to be bigger in order to be able to have enough maneuverability to fix what is broken. Gabrielle’s 2nd heart surgery was on November 3rd, 2011. Her surgeon, Dr. Gandhi, said that there were two options for repair. The first option was that they could put a “roof” on the pulmonary artery but she would have no valve. The second option was that they could put a pulmonary conduit or a homograft in where her pulmonary artery would be. This would give her a valve but she would require additional heart surgeries to replace the conduit as she grows. Dr. Gandhi wouldn’t know which option to go with until he was inside her chest, looking at the artery itself. He decided in the end to go with option 2 which means that we face more heart surgeries as she grows.

The second surgery went smoothly and we were in the hospital for 5 days total. Gabrielle stayed on the oxygen nose prongs longer than what they thought she would, but she came out of the surgery extubated (off the breathing machine) and every step forward, though sometimes a baby step, was a step closer to being done. You can read more about the surgery here.

What are the odds? Congenital heart defects affect 4 in every 10,000 babies born. And 10% of the congenital heart defects are some form of Tetralogy. Tet babies are often associated with different defects as well like cleft pallet or DiGeorge Syndrome. We consider ourselves blessed not to have these further complications to deal with. Other than Gabrielle’s broken heart, she is a perfectly developed little baby. Her body will perhaps remember but her conscious mind will not and we are thankful of this.

If you have any further questions of congenital heart defects, or Tetralogy in particular, please feel free to email me at amandaasabee (at) gmail (dot) com. If you’ve recently found out that you will have a child undergoing a similar surgery or you have faced a similar battle, I’d love to hear from you too. The potential for community and support during a child’s illness cannot be understated.

I?look forward to keeping the blog updated with her continuing health and our experience through her surgeries and healing.

27 Thoughts on “Tetralogy of Fallot – Our Story

  1. My niece was born with TOF with a couple other complications. She is now 15 years old and a very active athlete. She is our little heart baby.
    I will keep your little heart baby in my prayers.