Time running out for baby on life support - WSMV Channel 4

Time running out for baby on life support

Posted: Updated:
CLARKSVILLE, TN (WSMV) -

The family of Steffen Rivenburg Jr. says they have less than two days to find a new doctor with a revised medical plan.

If they can't, he will be taken off life support.

"That's not their call. They are not God. That's the problem. They have been sitting up there playing God with this child," said Lisa Rivenburg, the baby's grandmother.

Steffen has Down syndrome and congenital heart disease.

He and his sister were taken into DCS custody in February. The state is not allowed to say why. The biological parents say the state accused them of neglect it’s because they had to reschedule doctor’s appointments.

Steffen's mother Trish said while in custody Steffen became sick with a virus. He has been at Vanderbilt since.

Steffen needs a new heart, but the family says doctors told them he is too sick. A court injunction has kept the child on life support. The family asked for an extension of that order, but it was denied.

"I think he needs a heart transplant and I think he has a chance if he has a heart transplant," Lisa Rivenburg said. "If the heart is the problem, then let’s fix the heart. Because they’re the one’s that messed it up by doing too many surgeries and making the muscles so hard that it won’t beat. So we get a new heart. The new heart beats and we should be good.".

Vanderbilt University Medical Center released the following statement on the decision:

We are gratified that the Court recognized that the medical professionals on the treatment team should be allowed to make the decisions that they believe, in their professional clinical judgment, are in this child's best interests. It has been and has remains our desire to do so in collaboration with the child's parents.

Baby Steffen's story has gotten nationwide attention.

Lydia Hubbell joined the fight to keep Steffen alive after she heard his story.

"At some point the mother might say yes, I think it's time to say goodbye, but she is not there yet and she doesn't feel like the baby is there yet," Hubbell said.

Lisa Rivenburg shared a video she took while visiting Steffen that she says proves the baby is still full of life. He can be seen moving and raising his arms.

"This baby wants to live," Hubbell said.

Lisa Rivenburg says the family is frantic trying to find a new doctor.

"Hug your children and kiss your children. Don't let them go because you could lose them tomorrow," she said.

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