Doctors Baffled By Son's Medical Condition 🤯

Clara Violet

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00:00So you were drinking while you were pregnant, too? You caused this. Shame on you for doing this to your child.

00:04Fetal alcohol syndrome, or FAS, is caused by a prenatal alcohol exposure.

00:09It is not genetic, but environmental, resulting from alcohol crossing the placenta during pregnancy.

00:14Prejudice is not because of drinking. It is not because of...

00:18It is not because of smoking.

00:21It's a random mutation that happens, or deletion, of the fifth chromosome.

00:24Sarah has received a lot of hate due to her son's condition, so she wants to set the record straight.

00:30Now, it can also be passed down, but you need genetic testing for that.

00:34So this is Matthias. He is my three-year-old. He has prejudice in Tresme 9.

00:39When he was four months old, he did get hernia surgery.

00:41It was just supposed to be a routine. We were supposed to be there just for one night.

00:44He has these episodes where he holds his breath. He's done it since he's come home from the NICU.

00:49He goes limp. He can turn blue. He's fine a couple seconds later.

00:52We're basically going to let him have an episode if he has it.

00:55Doctors had no idea what his breathing defect meant, so they decided to let it play out.

01:00I guess Matthias has a feeding team right now.

01:02He's been in the NICU, and then afterwards I pumped, but he never really latched.

01:07And I just wanted to breastfeed my baby and just thought I could ask.

01:11Every other nurse I've had never was concerned, so it's frustrating.

01:15And you ask for help again, and you get like, the doctor said we're going to go home.

01:20Because now his episodes aren't a concern, and that's just how he is, which we've been trying to say.

01:26The system, it's a money scheme.

01:28The miscommunication and misinformation between every single level and every single shift is ridiculous.

01:35My child should not have to go through any of this.

01:38Doctors kept testing Matthias, as his rare disease was difficult to identify from early scans and tests.

01:44A growth restriction, a heart defect, an underdeveloped jaw, microcephaly or a small head.

01:50Sometimes wide-set eyes and the nose would be indicators, but not necessarily.

01:55He looked like a normal baby.

01:56He was just small, and he had a bigger nose.

01:58My husband has a big nose.

02:00There was nothing abnormal in his readings to send us off to a geneticist.

02:04She faces the online hate, knowing that her experience can help someone else out there.

02:09Now, when I had Matthias, I was very lost.

02:11I was scared.

02:12There is not much research about this syndrome.

02:15When I officially decided to post Matthias and bring awareness to his syndrome, it is because when I looked back, I needed that.

02:25Matthias is making a difference.

02:27And my ultimate goal is to bring awareness to the syndrome so that other families don't have to go through the pain and the heartache.

02:35If doctors, nurses, health care worker can help advocate and know how to navigate this syndrome.

02:43People like to question Matthias' quality of life, but Sarah wants to emphasize how he is capable of living a happy life.

02:49He's very loved.

02:50He's taken care of.

02:52He's happy.

02:53All his needs are met.

02:54He's living his best life.

02:55Now, is it hard for him?

02:56Probably in some aspects.

02:58But again, he doesn't know any different.

03:00He has Jesus in his life.

03:02He has parents that love him.

03:03He has siblings that love him.

03:05And I really, truly believe that's what makes his quality of life that much better.

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