July 28, 2010 — -- For two months, as Erika Johnson ached to bond with her newborn baby and her breast milk dried up, her daughter remained in the custody of Missouri's Department of Social Services.
Johnson and her boyfriend Blake Sinnett, both students, had prepared well for the birth of their first child and say they did nothing wrong. But the 24-year-olds are both blind.
Johnson delivered Mikeala on May 21 at Centerpoint Medical Center in Independence, but when she had difficulty breast-feeding and the baby began to turn blue, a nurse called social services.
The case was dropped last week and Mikeala went home, but only after spending 57 days in foster care.
"It was horrible," said Johnson. "There was the pain of not breastfeeding and she wasn't there. I used to cry every day, 'What if she forgets me?' The hardest part was to see her go home with someone else."
Now, the new parents are preparing to file a lawsuit claiming their civil rights were violated when they were denied the opportunity to care for their daughter. They say they want make sure it never happens to another blind couple planning to have a family.
"I'm the one that should have been waking up at, you know, one o'clock in the morning feeding her," said Johnson. "We're visually impaired, not mentally impaired. And you know we're just like everybody else, we just can't see as well."
While nursing the baby, Johnson said she sensed something was wrong and called a nurse.
"Everything was going smoothly until I had to breast feed, and there was some breast blocking the nose," said Johnson. "I asked the nurse if she was OK and she was beginning to turn blue. It could have happened to anybody."
The couple alleges the nurse was not properly trained, and the state's social service system "also has a problem with the training of its employees," according to their lawyer, Amy Coopman.
"It's a combination of multiple violations at a multiple level -- it's so egregious," she said. "At the top, it's unconstitutional. The parents had a right to raise their kid and the Constitution protects that. It's one of the oldest liberties forever. It doesn't matter if you are blind, deaf or in a wheelchair. You have the right to raise your child and they denied it for two months."
Centerpoint Medical Center's Chief Medical Officer Dr. Christopher Sullivan said in a prepared statement that the welfare of patients was the hospital's "top priority."
"Legitimate concerns about the safety and well-being of any patient are reported to the appropriate authority as required under Missouri law," he said.
The hospital is "committed to providing the very best patient care for our expectant mothers and newborn babies," said spokeswoman Gene Hallinan, who said she could not comment on the specific allegations because of patient privacy.
She said that "absolutely no action" would be taken against the nurse in question. "Legally, she has to report legitimate concerns to the authorities. It's part of the statute."
1.3 Million Americans Are Blind, Many Are Parents
The Missouri Department of Social Services would not comment on the case, but a spokesman told ABC's affiliate KMBC that children are not taken from their parents unless there is abuse, neglect or the welfare of the child is imminent danger.
The couple was allowed to have hourly supervised visits a few times a week but could not bring Mikeala home without a hiring a helper with sight who could work around the clock.
"I told her I didn't understand and it was ridiculous that we had to go through this," said Johnson. "We even went to visit her in the hospital before she had been placed and we were not allowed to hold her."
"There will be situations where it is appropriate to get child welfare involved if there is real concern about the safety of the baby," said Dr. Cindy Christian, a pediatrician at Children's Hospital in Philadelphia and chair of the committee on child abuse and neglect for the American Academy of Pediatrics.
"When we know what the disability is when they are first born, it's not appropriate to call social services if everything else is OK. You strategize if they are blind parents and call some blind services in the area and see what support is available…In a situation, not knowing the facts, you always work with the family before thinking of removing the child simply because of a disability."
An estimated 1.3 million Americans are blind, and many of them successfully go on to be parents, according to the Baltimore-based National Federation of the Blind (NFB).
When Johnson was 13 months old, she had an allergic reaction to medications that caused Stevens-Johnson syndrome, severe skin blistering that damaged her corneas. Sinnet has been blind since birth.
"I see colors and people up close, and can see enough to read print if it's large enough," she said. "I am legally blind, but I have some sight."
The couple met through an online blind network. Johnson moved from Tennessee, where she was in college, to Missouri when they found out she was pregnant.
"Blind people can do virtually anything," said NFB spokesman Chris Danielsen. "The only thing we can't do right now that I can think of is drive. The misconception is that if you don't have sight, simply, you don't have the capacity. What people fail to think about is that blind people develop alternate ways of doing things."
Johnson's nurse said he was concerned how a blind mother would be able to take the baby's temperature, or what she would do in an emergency.
Now, parents can buy "talking" thermometers, according to Danielsen. "How would they get to the doctor? They would use public transport or take a cab. They would call 911 if it were an emergency. There is nothing inherently visual about diapering and breastfeeding. They still have a sense of hearing."
Baby monitors, child-proofing and other precautionary measures do not require sight, Danielsen said.
Such is the case with Mark and Melissa Riccobono, who are both blind and raising a 3-year-old son and an infant daughter only six days older than Mikaela Sinnett. Melissa was born without sight and Mark lost most of his vision from glaucoma.
Melissa, 31 and a former school counselor and educational consultant for Discovery Toys, said she wanted to be a mother all her life.
"My older sister is also blind and she has three children," she said. "When it was time for us to start, I never questioned it. I had a lot of experience with nieces and nephews and helped babysit in high school. Families trusted me with their kids from infants to 10 years old. I knew blind people could do it."
Misconceptions about Capabilities of the Blind
"People have general misconceptions about the capability of blind people," said Mark Riccobono, 34. "I can be dressed in a suit coat and tie and nice shoes and walk down the street with Austin, my 3-year-old, and every now and then someone will say, 'Isn't it great he's there to take care of you. The only thing a 3-year-old takes care of is himself."
They say the challenges are the same as all parents. "I want my 3-year-old to listen and not to think he is the center of the universe and have patience," said Melissa. "How do I get the baby to stop crying when he's having a fussy period?"
Austin has always worn bells on his shoes so his parents can know his location, in addition to audio cues.
"You have to figure things out," said Mark. "It's true for any parent. The techniques we use we invented because we know our son's patterns. He is expected to answer us if we call him. He knows he can't get away with nodding his head."
Once as a baby, Austin fell of the changing table and he had to go to the hospital. "I thought they would be all worried because I was blind, but they were wonderful. I reached for some wipes and he rolled off accidentally. Things can happen to all parents in a split second."
Support groups are important for blind parents; the NFB has a group forum for parent concerns. As executive director of the Jernigan Institute, which oversees education and training, Mark just released a training brochure for social workers, nurses and medical professionals about blind people becoming parents.
With her nearly 10-week-old daughter now home, Johnson is ecstatic, even about the middle-of-the-night feedings.
"We are doing much better now, though we had to adjust at first," said Johnson. "We fix her bottle that has lines that show the ounces. When I change her, I make sure I've got everything. Dressing is not an issue. I am the one who dresses her and I can see color. She's still too little to crawl, so we haven't reached those challenges yet."
Johnson said she hopes to return to school to be a Spanish translator and said she is not a "bad person."
"Makaela wasn't being abused or neglected, it was just because I was blind," said Johnson. "I just hope and pray this doesn't happen to anyone else. I wish I could teach people not to be so ignorant."
Coopman, her lawyer, agreed: "The real problem is not the physical loss of sight, it's the attitudes of the sighted public. It's an educational process."