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RECENT FAMILY PHOTO … On Labor Day, mommy, daddy and baby Dean David got to enjoy some time together in the Butterfly Garden at Motts Children’s Hospital where Dean is living until he gets a new heart. (PHOTO COURTESY CRYSTAL ZEHR)
Story Update: Baby Dean has received his heart. A follow up article is forth coming.
By: Rebecca Miller
You may have seen Crystal Zehr on WTOL-11 near the beginning of September as they shared the story of her seven month old baby, Dean David Zehr Bair. Recently we sat down with Crystal to get an update on how they all are doing.
It has been a rough seven months since Dean was born on February 12, 2020 and at five days old he was in surgery for open heart surgery. Baby Dean was born with half a heart and in order for him to make it, he needs a heart transplant.
With the pandemic issues, only his mother and dad, Norman Bair, have been able to spend time with him as he has spent almost all of his little life in hospitals. He was transferred to Motts Children’s Hospital in Ann Arbor, Michigan, almost two hours away, when he was just 3 days old. Since then they have been in and out of the hospital to care for him, with the staff at Ann Arbor becoming like family.
He did get to come home for a short stay in March but it was broken by a four day hospital stay in April for an incision infection. Then in May, shortly after Mother’s Day he returned with heart failure. It nearly broke her heart to leave him, but only one parent at a time was allowed with him and his Daddy, Norman, needed to have some time also.
Crystal will never forget driving away after dropping Dean and Norman off at the hospital and going home alone. During that 13 days, she did get to be there with Norman while Dean got a heart catheter. Soon after she and Norman changed places so he could go back to work, the hospital determined that they could both be allowed at Dean’s bedside. “Norman hates being away from us but he has to work,” Crystal shared. “There are so many expenses during all this!”
It has been a time of ups and downs for them all. Part of the time Crystal has stayed in the Ronald McDonald House, part of the time she has spent at his bedside or at home, and just this past week she went home to spend time with Norman and to recuperate for a few days. “I have grown to trust the wonderful nurses who care for our baby,” Crystal said.
“They are so invested in his life and some have known him the whole time. They are so good and kind. I had a bit of an emotional breakdown and was advised to go home and rest. I love my baby so much and feel I should be at his side, but I also realize that I have to take care of myself or I will not be healthy for him. This is a long road so I have to pace myself and not get sick.”
During this time, her PTSD service dog, Maxine, died and Norman buried her. When Crystal went home, Norman took her to the grave and they grieved together. Crystal shared that her family has been through a long hard haul since her daughter, Tirzah (which means “my delight”) died during her delivery into this world.
Crystal’s brother’s first child and their grandmother also died in 2013. “Now my brother and his wife have four healthy children and they love to talk with Dean on FaceTime. Their youngest is seven months older than Dean and those two babies will laugh and talk on FaceTime. It is precious to watch,” Crystal said. The rest of the family is in Kentucky but due to technology they have all stayed connected and she so appreciates their support. “I don’t know what we would do without them! Norman hangs out with us on FaceTime, too, sometimes a couple times a day.”
As Crystal is now back with Dean, she has chosen to stay at his bedside for a while. In order to get back into the Ronald McDonald house she has to get back on the two week waiting list, and she plans to go back and forth between home, and his bedside until a heart is available for him.
That is a topic about which she has spent much time thinking and crying. “We know that in order for our little boy to have a life, someone else has lost their child. For us now, it is about just waiting for a phone call. I feel so badly for the donor family, whoever they are, as I have lost a child and understand how they will be feeling. It will give Dean a chance for life and we are going to do our best to make it count for him,… and for the family who lost their child. “
“We will keep him healthy. We will not be perfect, but we will do our best. He will be able to do all kinds of active things because someone is giving us the gift of their child’s heart. We plan to treat it with love and care.”
They have also already planned to homeschool their children and feel that as he will need to be at home as a transplant child, this will work well to keep him healthy. His cousins are homeschooled, too, so he can be with them and not be around unlimited germs.
Presently, little Dean is being assisted by him mom and dad and all the nurses to move into each stage of development that is appropriate for his age. He can sit up, eats baby food twice a day, has a play jumper that he loves to exercise his legs to get ready for walking, and loves to chatter away with anyone who smiles at him.
His beautiful smile is a joy to all and he lights up especially for Daddy. Dean also has a foot piano to play, a swing to rest in and he loves to watch movies, especially Elmo in Grouchland. When the Garbage Dump comes on he happily does raspberries! His social worker has been a wonderful help, Crystal shared, getting occupational therapy, speech therapy and now music therapy available for him.
When asked how people can help, Crystal said that a GoFundMe has been set up, as well as an in-house fund raiser at Norman’s job. People can email them at deandavidstrong@gmail.com. or visit his blog on FaceBook at Dean David Heart Journey .
Rebecca can be reached at publisher@thevillagereporter.com