Neal Freeland

Engineering/marketing manager, family guy. My personal blog with a few work thoughts mixed in.

Piglet

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We’ve got some bad news, I’m afraid. Piglet has several congenital heart defects that add up to a pretty serious condition. Her ventricles are inverted, one of her valves is shaky and may not work, and there’s a hole in the interior wall. The medical terms are ventricular inversion, Ebsteins anomaly of the tricuspid valve, and VSD (ventricular septal defect). This is a rare combination affecting only 2-3 of 100,000 births.
 
She’s currently fine in the womb as she’s getting everything she needs from mom. She’ll be fine right after birth as the defects sort of cancel each other out and let the blood flow properly through the lungs and body. But her condition could deteriorate. She’ll be born in UW and will then immediately go to Children’s Hospital for 5-7 days of observations and tests. Julia will have to stay in UW to recover. Hopefully Piglet’s heart (especially the valve) will be stable and we can take her home. If not, we’ll have to assess what to do. Depending on the condition, the options run from fairly routine (a bit of medication) to darn scary (heart transplant). We’ll just have to see.
 
In the mid to long term we have to hope medical science comes up with some good solutions. The ventricular inversion means her heart got confused and the weaker ventricle that is only supposed to pump blood through the lungs has to work overtime to pump blood through the entire body. So the heart is set up to wear itself out sooner than normal. This could happen in 3, 5 or 20 years. We don’t know. It’s best to just monitor it and then act as needed. Trying to do something earlier returns no "yield". In other words, the risk of screwing something up by trying to fix it now outwiegh the likely benefits. Even with this condition she could lead an active life, which hopefully can be sustained as the field of cardiology advances every year with new treatments and improved success rates.
 
I know we’re only 2 weeks from 21 July due date, so sorry for the surprise on this. The ultrasound technician just noted some heart issues in a routine appointment on Tuesday, and we saw the cardiologist today (Thursday) to get a deeper assessment. These defects developed in the first trimester, are totally genetic abnormalities (just dumb luck, and aren’t related to anything that happened during pregnancy), and there isn’t anything we can do until she’s born. Knowing about this sooner would just have given us more time to prepare everyone emotionally and spiritually, which still may have been helpful.
 
I’m personally positive. She’s big (80th percentile weight and length) and has been wiggling like a champ all through the pregnancy. I know she has a strong spirit and will, and that she can’t wait to get out and meet everyone. Whether she’s with us a short or long time, I’m looking forward to her birth so we can see her, hold her, and let her know how much we love her.
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Written by nealfreeland

July 7, 2005 at 9:43 pm

Posted in Uncategorized

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