Forty to sixty percent of babies born who have Down syndrome are born with at least one heart defect. Lindie had two at birth. (How both of these were missed in my anatomy still amazes me). Lindie was born with a small Patent ductus arteriosis (PDA) and a large Atrial septal defect (ASD). Although both were discovered very early (she had an echocardiogram at three days old), both were not super alarming to her doctors.

We followed up both of the heart defects on June 13th (our 8th anniversary) and found out that Lindie's PDA had closed and her ASD went from large to medium in size. We will return in December for another follow up. Our prayer is that it will close on its own by December 13.

Heart defects can cause a variety of other problems. One of the biggest issues we *think* is caused in part by her heart defect is her struggles with feeding. Since the day Lindie was born she struggled to eat. At first it was mostly due to duodenal atresia, an obstruction of the duodenum that about 5-7% of babies with Down syndrome have. (How this was missed on my anatomy scan still amazes me). But even after her surgery to correct this, she still struggles to eat seven months later.

Thankfully we have a g-tube. The g-tube allows us to feed her breastmilk at home even when she is too tired to eat on her own. Part of me wishes Lindie was a candidate for heart surgery so we could just get her heart repaired in hopes that her eating would improve, but part of me is thankful for the time to *hopefully* allow her body to heal her heart defect on its own.

Either way, we'll know more in December. One thing I have learned is that although heart defects can be scary and they are very important to monitor or fix, they are very common among our kiddos and because of that surgeries to repair them are somewhat routine. This gives me a lot of confidence if Lindie does have to eventually have heart surgery.

Tomorrow I am planning to share more about Lindie's eating process on my Instastory: pumping, bottle feeding and g-tubing, our schedule, how we know how much to give her, what a g-tube even looks like- all of that good stuff! You can follow me throughout the day sharing videos over on IG or you can follow here once I post my Instastory here. 


frankie said...

i am so sad to hear about the cute baby. I hope he recovers soon and i could not even imagine such a cute good looking baby could be suffering from this disease.

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