Milan & Mandi Shetler
Sheila Elyse Shetler
May 15, 2017
6 lbs. 12 oz.
Akron Children’s Hospital
Sheila Elyse was born with one of the more complex heart issues that a baby can have. It’s called Heterotaxy Syndrome and is a rare birth defect that involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.” There are different forms of Heterotaxy Syndrome. All usually involve heart defects of varying types and severity.
They were first alerted of something not being right at the Ultrasound visit at Millersburg Hospital around the 20-week mark of the pregnancy. They found out about Sheila’s condition when they did an ultrasound at Akron Children’s a few weeks later. Hearing things like this is never easy but they were grateful that the doc found out about this while being pregnant, rather than after Sheila was born.
NOTE: Milan and Mandi had planned to move into her parent’s basement a few weeks before finding out about the condition of the baby. Now, it’s a blessing to have someone there to wash clothes, do the chores, and help in this way. Gods timing is always perfect.
Sheila was on IV immediately after being born to keep alive till surgery could be done. Normally, there is a blood vessel in the heart that is open while in the womb. This should grow shut after birth. The tube to replace that was missing. 2 veins behind the heart that were not connected. During surgery, they Inserted a BT Shunt Gore-Tex Tube and created holes in the veins and heart to connect what was missing.
They were told it was going to be an immediate surgery after birth. However, after being born, they were surprised to learn that she could breathe on her own. The Doctors thought it would be a good idea to let her breathe on her own to strengthen her lungs. She was on her own for 2 days, then got a breathing tube put in on Wednesday morning. This was amazing progress and evidence of answered prayer.
NOTE: One of the surgeons mentioned that when he saw the ultrasound, he expected her to be born and the die based upon what he saw. God is still in control and hears our prayers. With the things that have happened, it’s been the best case of what the Doctors had hoped for. And in some cases, even better than that.
Immediately after Sheila was born, they showed her to Milan & Mandi, then took her to get her stabilized and in sterile condition. The first time they got to hold her was on 28th. Approx. 2 hours after being born, she was transferred to Akron Children’s Hospital.
Surgery was on May 23.
She was prepped at 8:00 in the morning and Milan (wife) did not see Sheila until 4:30 that evening. The surgery was 5-1/2 hours long. The procedure was very similar to that of an open-heart surgery.
She was on a breathing machine from the 17th to the 27th.
First time holding Sheila in their arms was on the 28th of May. Almost 2 weeks after being born.
JUNE 7th - They inserted a feeding tube through her nose through her stomach into her small intestine to feed her directly since she was not able to handle the milk she was being given. This will help to gain weight and strength and aid in recovery. No idea how long she will stay there. It just depends on the progress Sheila makes. When she has enough strength, and is able to properly digest her food, she will be allowed to come home.
Lodging and Travel;
Mandi has been staying at Akron Children’s hospital at the Reinberger Family Center since Sheila was born. It is located on the second floor and offers a simple bed, shower and bathroom. Simple but a lot better than traveling back and forth every day. Milan has been working at Weaver Barns as much as possible since she was born and travels back and forth with friends and family. Milan had moved into her parent’s basement
They have been blessed with many visitors and appreciate all the love, prayers and kind words of encouragement on their behalf.