Bree with audiologist Robin Edmiaston, AuD., CCC-A

Bree的妈妈Areen永远不会忘记她6岁女儿出生的那一天. Thinking back on it brings her to tears.

“Bree出生时没有呼吸，”Bree的妈妈Areen回忆道.

她和她的丈夫博伊德(Boyd)知道出生时可能会出现并发症. 在怀孕期间，布里的超声波测量不正常，她被诊断出患有 skeletal dysplasia. There are hundreds of different dysplasias, 但直到她出生，他们才知道她的诊断结果，并可以做进一步的测试. 

“在她出生之前，我们有点否认，”艾琳解释说. “我和我丈夫都不是很高的人，所以我们认为她可能只是个子小.”

布里在坦帕当地的一家医院接受治疗，但她的呼吸问题仍然存在.

“She wasn’t breathing well. They didn’t know why and weren’t equipped,” Areen says.

她只有5天大，就被送到了圣约翰霍普金斯儿童医院. Petersburg, Florida, and admitted to the neonatal intensive care unit (NICU).

“The way they had everything set up for Bree, 她看起来终于第一次休息了,” Areen says. “他们知道该怎么做才能确保她感到舒适. We both just knew she was in the right place.”

Turns out, Bree is very special. 事实上，她太特别了，简直是万里挑一. In the NICU, 布里的基因检测显示了她的诊断:罕见的, 百万分之一的骨骼发育不良被称为奈斯特发育不良. 就在那时，他们还发现了听力丧失和软腭裂.

“When they did their rounds every morning, everybody came together, and we were involved in the whole entire process. We were never left out of the discussion,” Areen explains.

听力学小组立即开始跟踪Bree，现在她在听力学家的照顾下 Robin Edmiaston, AuD., CCC-A, at the 坦帕的约翰霍普金斯所有儿童门诊护理中心.

“Bree is a joy to work with! 布里在语言习得、言语和语言发展方面如此成功，都要归功于她的家人对她的悉心照顾,” Edmiaston says. “She has a bilateral hearing loss, 哪个会根据中耳系统的健康状况而波动. She’s been fit with hearing aids for both ears, 密切关注她是确保她听到所有语音的关键，这有助于促进语言和语言的发展.” 

The family also met Ernesto Ruas, M.D., who specializes in plastic surgery and cleft and craniofacial surgery, and would be the surgeon repairing Bree’s palate.

Ruas说:“每800个活产婴儿中就有一个患有腭裂。. “It’s a fairly common condition. 我总是告诉父母的第一件事是，请不要踏上内疚之旅. This is not your fault. 我试图以一种积极的方式来处理它，因为它是道路上的一个颠簸, but I always reassure them that this is a fixable problem.”

Most don’t have a known cause, 至少有一半的唇腭裂病例是通过产前超声诊断出来的.

“虽然公平地说，在产前超声波上很难看到腭，”Ruas说.

所以像布里这样的病例，直到她出生才被发现.

“It was very scary, but we met with Dr. Ruas and every day had a meeting with the team, doctors, 你和他们建立了信任和关系——我们知道她会得到最好的照顾,” Areen says.

Ruas强烈鼓励家庭在选择外科医生时进行研究，并确保问很多问题.

“我们看到许多来自其他机构的婴儿和儿童需要重新做手术, so research and choosing the right surgeon is critical,” Ruas says.

Bree was about 6 months old when she had surgery, and within a few weeks, 她的胃造口管(“g-tube”-一种喂食管)被移除，她开始奶瓶喂养吗.

对于不完全性唇裂，通常只需要一次手术. But with Bree, 她是一个特殊的病例，她可能需要后续手术，因为空气会影响她发出“S”和“Sh”的声音.

“10%的人需要进一步的手术来改善他们的语言，她就是其中之一，”Ruas说.

而他的家人正在和鲁阿斯讨论手术的可能性, 艾琳和博伊德为他们的小女孩已经克服的困难感到骄傲, including her recent kindergarten graduation.

“This world is not made for her size, and we want her to learn how to interact with that world, because it’s important,” Areen says. “毫无疑问，她会做出伟大的事情，她有一个很好的支持系统. 每个遇到她的人都会爱上她，因为她有这样一个甜美的灵魂.”

博伊德说:“我们知道她将面临比我们大多数人更多的挑战。. “我们最大的希望是她非常独立，对上帝充满爱.”

Areen and Boyd both say getting Bree care with audiology, 语言治疗(喂养)和物理治疗在不到一年的时间里改变了她今天的进步.

“It changed the projection of where she is. Early intervention is so important,” Areen says.