Bi-Directional Glenn Surgery Information

Here's some information on Maddie's surgery on Tuesday. She's having the Bi-Directional Glenn, 2nd stage in the repair for her heart. She is down the single ventricle path called the Fontan Procedure. Basically, at the end of the surgeries, she will function with only half of her heart, hence "single ventricle." At one point we had hope that Maddie would be a good candidate for the 1.5 ventricle repair, getting some usage out of her right ventricle and opening up the pulm. valve but since the cath, our team feels that she would not be able to sustain this type of repair. It was a let down since we always had hope that there would be some usage in her right side and not just let it "be" there. After the cardiologist explained that once we head down that path though, we can't turn back. We're much safer to do the Fontan for Maddie's future. He called the 1.5 repair the "circle of death" if it doesn't work and it looks like Maddie's would not work, a huge gamble if we tried it. She just doesn't have enough to work with there to do this type of repair. Bryan and I had always hoped for this because it eliminates that last surgery and if it was successful, her health and stamina would be better throughout life than with the Fontan. So it was disappointing to hear that it's no longer an option. But in the end, we want our baby girl to have the best possible chance and if things are bleak with that type of repair, we don't want to go down that avenue. We're very fortunate to have options and there are many kids and some adults who live today with the Fontan.

According to Maddie's surgeon, our risks have been cut significantly since making it to the Glenn. 25% of babies don't survive to the Glenn and now that number has been cut in half, post surgery and recovery after the Glenn. A big relief yet still scary at the same time. Here's the info. about the Glenn surgery. Really it's just replacing what she already has and cuts down the work load of her heart since it's not having to pump blood to the lungs now. Her O2 saturations (sats) should hang in the low 80's (healthy hearts are 99-100%) so she could still look blue but a big improvement from where her sats are now. Our dr. did say that babies typically really take off after having their Glenn since they don't feel so tired. They start eating better, growing and hitting those developmental milestones. What wonderful news to hear. My baby having some energy...amen!

The aim of this operation is:
• To maintain the flow of deoxygenated (blue) blood to the lungs by attaching the superior vena cava directly onto the pulmonary artery. This is called a cavo pulmonary shunt.
• The Gore-Tex shunt that was inserted in the operation for stage one may be removed.
This operation is necessary as the baby's heart will have grown but the Gore-Tex shunt will have remained the same size. The shunt will therefore no longer provide the baby with oxygen it needs. Since the cavo- pulmonary shunt is made from the baby's own tissue, it will grow with the rest of the heart. It is passive blood flow to the lungs, not pumped since the right side of the heart cannot function in this manner.
The baby will probably be in hospital for a shorter time than for the first operation as this operation is less complex than the first.
The final operation is called the 'Fontan Operation', which is often done at between two and four years of age.

In "Maddie News," she feels ok- still desatting throughout the day and still very tired. We do get some smiles but overall, she just isn't her happy self. When she desats, she gets a panicked look and starts really fussing, which doesn't help the matter. This worries me with her, although if I felt like I was suffocating, I probably would do the same. I've been so proud of her, she's a tough little thing, a true blessing. Here's one of her "looks" when she isn't feeling so hot. Still my pretty girl.