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Hartland Community Rallies Around Baby Battling Rare Skin Disorder

A Baby Erin hat drive and benefit concert have been organized to help the Brown family.

Seven months ago, Shannon Brown, a 2004 Hartland High School grad, was just another excited mom-to-be preparing for the arrival of her first baby girl. A typical, healthy pregnancy for the first 29 weeks, Brown was eating right, staying active and doing what every other mom does to protect her unborn child.

The first signs of trouble came when Brown began measuring too small. Then, doctors discovered the amniotic fluid was at a dangerously low level and her blood pressure had gone up.

Nothing could prepare Brown and her husband for what happened next.

Baby Erin, now 6 months old, was born with Hay-Wells syndrome, a very rare form of ectodermal dysplasia, which affects the skin, hair, nails and teeth. According to the information the Browns received, there are only 30 known cases worldwide.

Lauren Brynolf, a high school friend of Brown's, has organized a  for baby Erin, with an overwhelming response from the Hartland community. 

“It was insane,” Brynolf said. “They just started dropping it off and I started picking it up and my whole living room is filled with donations.”

Because of the medicine that covers Erin’s body, clothing quickly becomes unusable. Hats, which can only be worn once or twice, are especially needed to help protect Erin’s sensitive scalp. 

A  is also planned for the family at the Uptown Grill in Commerce Township on July 8.

Brown gets emotional when she thinks of all the support her daughter has received from the community and says she and her husband are thankful they decided to move back to Hartland.

A surprising diagnosis

In the delivery room of the Atlanta hospital near where Brown and her husband lived at the time of Erin's birth, Warren Brown was the first to see his new infant daughter and knew immediately that something was wrong.

“I had no idea what to think,” Warren Brown said. “Literally, it looked like skin was stripped off of her.”

Her delicate baby skin is covered in harsh red blisters and sores that resemble burns. Baby Erin is covered on a daily basis in thick medicine and wrapped in special gauze which wil help heal and protect. Still, Shannon Brown says that her daughter is in constant pain from her condition.

Immediately after Erin was born, the delivery-room nurses were panicking, according to Warren Brown. While his wife was recovering from the caesarean section, the new dad was forced to start calling family members, questioning them about skin disorders that might be hereditary.

“That’s how we announced our daughter was born,” Warren Brown said. 

During the confusion, the newborn was whisked away to NICU before Shannon Brown was even given a chance to see or hold her new baby.

“We weren’t allowed to even touch her,” Warren Brown said. “They were afraid her skin was going to fall off."

Shannon Brown, who didn’t see her daughter until four days later, says she is still coping with the traumatic effects of not even getting the chance to look at her infant after she was born.

“The first time I got to see her, I saw her fingers and she was being wheeled away in a box to a different hospital,” Shannon Brown said. “I didn’t get to hold her for nine days.”

The hospital made a decision to transfer baby Erin to a different hospital two hours away from her parents. It wasn’t until she was 6 weeks old, however, that the parents were actually given a diagnosis.

“I saw pictures of her and it was devastating, I’m not going to lie,” Shannon Brown said. “She was beautiful to me because she was my daughter, but at the same time, you don’t want your baby to look like that.”

After several frustrating weeks of dealing with doctors in Atlanta, the couple decided to move back to Michigan to be closer to Mott Children’s Hospital in Ann Arbor. It was a move that has help improve their medical needs, according to the Browns, and they say they are relieved and thankful their new doctors have been researching and finding new ways to help heal their baby girl.

A constant battle

Still adjusting to life as new parents, Shannon and Warren Brown are also dealing with all the extra needs their daughter has. With the help of Brynolf, whose own baby was born within days of Erin, Shannon Brown says she is able to separate what are “normal” mom issues and “Erin” mom issues.

The emotional support of their family and friends has helped the couple cope over the past few months and with the addition of the community hat drive, baby Erin is slowly being recognized throughout the community.

At last count, Brynolf says she has received more than 200 hats, a year's worth for baby Erin, as well as other esstential items that are needed on a daily basis. Brynolf will be accepting donations until the July 8 concert.

The concert will take place at the Uptown Grill with the band ODAYIN performing. Proceeds from the event will go toward helping the family buy an air conditioning unit for their home since Erin, who was born without sweat glands, is unable to cool herself down.

To donate items, contact Lauren Brynolf at lauren_herrick@hotmail.com. Items needed include:

  • Receiving blankets
  • Boppy covers and the occasional boppy they have to replace 
  • Harness/shoulder strap covers
  • Padded car seat head rest
  • Baby laundry detergent 

Clothing can be dropped off at 1380 Raleigh Dr, Brighton, MI, 48114. Monetary donations can be made at any TCF Bank to the “Erin Brown Fund” or via PayPal to erinbrownfund@gmail.com

Courtney Webster June 15, 2012 at 01:55 PM
Im very sorry to hear that this poor innoccent child has to experience such pain! I myself have ED as well as my daughter, so I can understand some of the feelings they might have. Itll get better, hopefully.. :)
Denyse December 07, 2012 at 12:46 AM
I pray that the diagnosis of Ectodermal Dysplasia: Haywells Syndrome can become as much of a blessing as it is a challenge as it has for myself & my 3 children who are all affected by the exact condition. Much love & blessings to your family from ours. Gentle hugs too.
jennifer Hagerty December 07, 2012 at 03:40 AM
Many blessings to Shannon, Erin, Warren. You all are giving her everything she needs. LOVE! Care! Encouragement! My hats off to you. I know the struggles we went through with Joshua and his Ectodermal Dysplasia and you both have got what it takes to make her better. Keep up the good work!

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