When Lindsay went in for her 20 week ultrasound she had no idea that she was going to find out much more than just the gender of her third child. As Lindsay laid on the exam table in her paper gown, with her husband and two children by her side, the doctor informed them that their new baby boy had hypoplastic left heart syndrome (HLHS) and his odds of survival were not good. That baby is now 7 years old and his name is Lincoln. This was the beginning of their 22q journey.
Throughout this episode Lindsay shares her and Lincoln’s 22q story. She shares how she struggled to keep him alive during the first 2 years, all the operations, feeding struggles and how she learned how to advocate for her son.
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Within this episode we discussed:
- Hypoplastic left heart syndrome (HLHS) is a heart condition that develops before birth (congenital). The left side of a baby's heart doesn't form right. This keeps blood from flowing through their heart in a normal way. Pediatric cardiologist - Dr. Anne Farrell, MD in Indianapolis, IN
- Shone's complex is a congenital (present at birth) heart disease. It affects how blood flows both into and out of the left side of the heart.
- Ronald McDonald House
- Feeding - Lincoln’s feeds were ok but he was having a hard time keeping down his feeds. The doctors wanted to send Link home on an NG tube but she did not. Nasal reflux - all came out his nose, sometimes choking, concerned about aspiration phenomena.
- Constipation - Rectal surgery needed.
- 22q Family Foundation
- Velopharyngeal insufficiency (VPI) occurs when the back part of the roof of the mouth (soft palate) and the pharynx (throat) don't work together to make a good seal when your child is talking. This is often caused by a soft palate that is too short or muscles of the palate that do not work well.
- FLAP REPAIR Surgery Posterior Pharyngeal Flap is a surgery done to help correct velopharyngeal dysfunction
- Cincinnati 22q clinic
- Tethered cord release surgery is a type of surgery to reduce or remove the tissue that is preventing the spinal cord from moving freely. Found during an MRI and if they hadn’t found this then Lincoln never would have been able to potty train. The reason being he wouldn’t have been able to hold a full bladder so they did a surgery to correct it.
- Low tone - Feeding is a concern. Choking is always a concern
- Helpful School App - SnapType Pro - allows teachers to take a photo of a worksheet and allows students to then use the Ipad to complete the worksheet on the ipad.
If you would like to contact the 22q Podcast with any questions, comments or if you are interested on being on this podcast email Becky at 22qpodcast@gmail.com. Don't forget to subscribe and share this podcast to help raise awareness about 22q. And never forget 22q family that YOU are not alone.
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