Coming Home

By Brendan Sullivan

Bringing a baby home is stressful for any parent, even when the baby is healthy.  But when you know you are bringing home a baby who has special needs and a likely fatal form of Congenital Muscular Dystrophy, your stress level shoots through the roof.  As we were already parents to a child with the same condition, we thought we knew how to prepare for bringing Keira home.  We couldn’t have been more wrong.

Keira was born on Dec 22, 2008 by C-section 5 weeks early.  The hydrocephalus was causing her ventricles to expand at an abnormal rate, which caused her to go into distress.  We knew that she would be taken to the NICU immediately.  We knew that she would have difficulty breathing and eating, and that her survival through the first month wasn’t guaranteed.  Despite this, Keira did surprisingly well.  As predicted, she had trouble breathing and was eventually trached because she constantly obstructed her airway with her tongue.

Our little “Maggie Simpson,” as she was nicknamed due to her ability to suck on a binky, was having problems clearing food from her throat, so she also required a G-tube.  She had another surgery to implant the ventricular shunt, which drained excess spinal fluid collecting in her brain.  With all the “hardware” that Keira required, bringing her home from the NICU required us to be trained in trach care, become CPR certified, and cover at least 16 hours of private duty nursing every day, something which my employer-paid insurance didn’t cover.  Luckily in the state of Virginia you can apply for Medicaid waivers where they only count the income of the applicant.

With Keira coming home, one of the biggest adjustments was learning how to deal with a nurse in the house 16 hours a day.  We had to be comfortable with a complete stranger taking care of Keira, alone, while my wife and I were out.  We also had to adapt to what seemed like a mini ICU in our home.  Keira was not ventilator dependent at this point, but we still had oxygen, pulse oximeters and other equipment in the house needed to keep her safe and stable.

Despite all the necessary equipment and the ability to care for Keira at home in Virginia, we realized we were still far from comfortable.  We had moved from Connecticut, and as we had another child with the same syndrome our minds were constantly playing the “what if” game.  What if something happened while we were so far away from our families?  Would they be able to get down here in time?  What if both my wife and I were out of the house (I worked 45 minutes away in DC at the time), and the nurse needed one of us to get home quickly? We knew we couldn’t risk something happening while we were this far from our families, so we decided to move back to Connecticut.

The big move occurred in late August of 2009, and couldn’t have come at a better time.  Within 2 weeks, Keira started coming down with fevers; her seizure activity picked up, and we couldn’t keep her off more than a liter of O2.  She was rushed to Yale Children’s Hospital on Sept 11, 2009 with pneumonia.  Little did we know, our other daughter, Ava, would be sent to Yale just one week later with the same problems!  And after our move back to CT, we ultimately lost the Medicaid and nursing coverage that we desperately needed to help us take care of our girls.

Keira’s hospital stay stretched from what should have been only a week or two, to 8 months! During that time, we lost our angel, Ava, to what would be her 6th bout with pneumonia.  She died in the same hospital room that she was baptized in, only 2 doors down from Keira’s room.  Her death, on December 23, 2009, was the day after Keira’s first birthday.  Dealing with Ava’s death while trying to get Keira home made this time in our lives extremely difficult and depressing, and certainly made us feel as if Keira would never come home again.

One of the biggest differences between Connecticut and Virginia was the Medicaid system.  In Connecticut there is only one waiver, which is income based, with a 4 year waiting list!  So we knew that we had a big fight on our hands because 1) we were over the income limit for straight Medicaid, 2) my employer-provided insurance didn’t cover private duty nursing, and 3) we became very frustrated that we had to re-learn everything, despite showing the hospital staff on numerous occasions that we knew how to care for our child and were comfortable doing it!

Over the 8 months that Keira was hospitalized at Yale we applied for Medicaid 7 times, and were denied 6 times.  The fateful day, when she was finally cleared for Medicaid, came only after holding a fundraiser where I was interviewed by the media, after we had placed significant pressure on Medicaid through both the media and state representatives.  On June 8, 2010, we brought Keira home with us, along with 23 hours of home-nursing care! The fight was long, arduous and extremely difficult, especially dealing with the loss of Ava.  But perseverance will ultimately pay off!

Key points to remember when bringing your child home:

  • Learn as much as you can from the professionals.  They may not be related to you, but they do this on a daily basis and you can learn so much!
  • Be comfortable with strangers coming and going.  They are there to help you take care of your child.
  • Never be afraid to ask questions and DEMAND answers.
  • Finally, persevere and advocate for your child.  Make his or her life as normal and as comfortable as you can.  They can’t fight for themselves, so you must take on the fight for them!

 

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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