February marks CDH International’s 25th Anniversary! CHERUBS is founded in memory of, and named for, Preston Montague and Andrea Jones, two very special CDH babies that were Shane Torrence’s hospital roommates (please see Shane’s feature last week), and for all CDH babies that do not survive.
CHERUBS, now CDH International is truly a grassroots organization, created when there was nothing. There was no internet, no other support groups to turn to or model after. They were just CDH parents trying to make the world a better place for families like ours. CHERUBS started out very small with just a typewriter, a kitchen table, $100.00 in donations, and 2 members. One of these members was Preston’s mom, Rhonda Montague.
Over two decades of supporting thousands of CDH patients, CHERUBS has grown and evolved to explore CDH research and awareness in addition to family support. In early 2017, members of the medical community began approaching CHERUBS about the need for hospital accreditation for CDH treatments. The goal is to raise the standard of care both locally and worldwide to ensure quality care for all children affected by CDH. In order to move forward with a focus on research and accreditation, the charity was restructured and reinvented as CDH International. This new organization reflects our goal as a collective group of hospitals, researchers, and charities working together on a global initiative to stop Congenital Diaphragmatic Hernia. CHERUBS still exists as a support division of CDH International.
The following story is the story of Preston Carr Montague, written in 1996 by his mom, Rhonda:
“Preston, a name I chose, a name I love to say. It is the name of my son, a name, a baby, a person whom I will never forget. Preston, born 12/29/92, died 2/27/93. The birth of my second son, Preston, was not as joyful a moment as my first born son. Yes, I was one of those mothers. Screaming something is wrong before the doctors even realized it. Taken from my arms, surrounded by doctors and nurses- there lay my son, a diaphragmatic hernia baby- diagnosed 3 hours later- then transferred to UNC. After a long operation and 24 hours later, I finally saw him again. Within an hour after my arrival to UNC he was life-flighted to Duke. I am sure that most mothers with sick children don’t need an explanation of the memories, sounds, feelings of emotion, despair and helplessness of the days and months and many life-threatening decisions later. We all share a pain of our own in our own ways. My fondest memories of my son were wiping his dry lips with neosporin, giving him the only 2 real baths he ever had, playing different tunes on his cassette tape, winding the special toys that I had carefully picked for him, holding the hand that had less tubes, wiping the matter that sealed his eyes shut so that he could see, and keeping his diaper dry and bottom rash-free. This was the concern of a mother because the doctors and nurses weren’t interested in bottom care! These were the things that made me the mommy and the others the doctors. It has been 3 years and 4 months since that horrible day for us and finally a restful day of peace for my little one. I call those days the best and worst of my life. At times it feels like a dream I had long ago and at other times it feels so close to me that I can smell the smells and hear the beeping sounds. It was not long ago I had taken my newest miracle, Sierra (2 years) to ER for stitches. I had washed my hands with hospital soap as so many times in the past. The smell of that soap is like the scent of my son. I remember trying to keep my hands from touching things so that I could keep the scent as long as it would stay (my little girl was just fine, only a few stitches by the way!). To all of you parents, mostly the mothers, because we are usually the sentimental ones, I would like to say; it is ok to cry, ok to be sad sometimes. Others will never understand. Do what you have to do to grieve. I do things that others would probably send me to a mental institution over. But, it is my way…. for example, I talk to Preston, dance with his picture, took my pregnancy test at his graveside, close my eyes and dream of him in heaven, take out his toys or tapes or pictures and just in my own way let him know that I love him and he is still alive in my heart. If this is crazy- so be it. I would rather be crazy than to be without him. I even have graveside parties and we send him balloons. Once I sent a balloon with all the children’s names who had once been his bedside friends. A lot of parents who have recently lost a child wonder how they will go on. First and most important- God is the key. Without Him, I would not have survived this crisis in my life. People ask how do you do it and my reply is always the same- God’s grace. He gave me my son, He made a place for my son and one day He will join me with my son- This was God’s promise to me when I promised to be faithful in serving Him (I became saved the night Preston was born). To those of you that God is speaking to; hear me, Do Not Test God- Preston was God’s link to my heart. And when the link was no longer needed- He took him home. Now I have to be faithful not only because he has someone I want to see again but because I truly love God and more than anything I want to be where He is.
Where do you go? What do you do after reality of this cruel world starts to set in; no more cards or phone calls, no more sympathy which sometimes I actually long for. You go on and it goes on living inside you. One of the hardest questions people ask is “How many children do you have?”. Such a simple question; such a complex answer. To most I say “Three, one of which is in heaven” (there’s that sympathy I wanted!). And on the days I’m not so strong, I jus say “Two” and in my heart I say “I’m sorry”. Others won’t want to hear about or talk about it anymore. The take down the picture of the baby who never was and place it in an album. It has been 3 years. I have learned to exist with the heartache. I am a good mother and wife. My only regrets of guilt is how my son suffered. His little body was pushed to the point it could no longer take it. His kidneys shut down; we pushed him to the point his skin began to tear all over- he became unrecognizable. On that sad morning at 10:30 we cut off his ventilator. He took 3 long breaths and then it was over. What he and we went through was all in God’s plans. I’ll never understand it really, but I think of (The Virgin) Mary- Her son was born, He taught the world a lasting lesson, and then early in life He suffered a terrible death. So that we may live forever. It may not be right to compare my life and my son’s life to God’s life. But as I have felt, Mary must have felt and my son will live forever too. And this makes me proud of him and to be his mommy.
Trauma in Siblings: Derrick my first born, was 22 months when Preston was born- fully potty trained, sleeping in his toddler bed and expecting a new baby like the rest of us. He is a very sweet dispositioned child; very smart, very sensitive, and had never been apart from mommy much. Those 2 and half months of his life changed him in a lot of ways. He was swept away from me for days at a time. Slept with everyone and still today comes in our bed even though he is now 5 years old. He had started wetting the bed at this time back in ’92 and still today wears pull-ups the majority of the time. He was with Preston a lot; shared his toys and made special pictures for him. Even in his small age he had a great understanding. I hid nothing from him. However, seeing his mommy and daddy sad all the time must have been hard. Sometimes- most of the time- he was my greatest comfort. It had been only 3 days after Christmas and 2 and a half months later he finally returned home to play with his toys- the tree looking like someone had turned it to nothing was finally taken down late February. When Preston died we bought Derrick a plane mobile to hang in his room- a gift from Preston- to this day it still hangs and he remembers why. We’ve also in time given him one of Preston’s special stuffed dogs- he sleeps with it every night. This is his little brother to him. He has his bond somehow. About a year ago we took him back to Duke. It hurt that he seemed bewildered. What I thought he would remember, like the shuttle (his favorite thing to do), or the fish tanks, or the parking deck where he’d tell me how to park and which buttons on the elevator to push, or the Ronald McDonald house, where he played upstairs, he seemed unknown to it. Then later in the cafeteria he looked at me and his dad with tears in his eyes and said; “I don’t remember all of Preston but I loved him a lot.” Ripped my heart out and I wondered if I had pushed too hard to keep Preston’s memory alive for him. During pre-school last year they were discussing someone’s pet dying. Derrick began to talk about his brother dying- and he’s a pretty shy little boy. His teacher was in awe and asked me about if it were true or not when I picked him up. My heart broke for him. We went to see Preston’s grave that day and brushed the sand away, etc.. He didn’t want to talk about that day at school. I knew that moment it would always be inside him just like it would be inside me.
Then there is my little girl, age 2. Oblivious to all that has happened and to the miracle she is to us. She hears his name and visits his grave and birthday parties also. I know she has a sense of this abstract being to be special. She’ll find his pictures at our house and of course knows they are of “Preston.” When she says his name she reminds me of another 2-year-old 3 years ago and I love to hear the song of that name in a child’s voice. Sierra visits the grave with us and even her first standing up on her own to walk was out there on Easter afternoon- of course there were pictures. This past Easter we hung a toy chicken thing on his grave and Sierra wanted it. She now drags it around and calls it “Preston.” She has no idea. I truly hope that one day she will not fill second choice. Even though her life was based on the child we lost and the child we wanted. However, since my first baby doll years ago I have wanted my very own little girl and now I have just that from God above and she truly is the dream of a daughter I have always wanted. I hope she will see it this way. If you have siblings older or younger, remember to account their feelings. They are smart and sensitive to mommy and daddy at any age and they are special little miracles too.
A Bad Experience Leads To Comfort – I had a root canal not long ago. The first and hopefully the last. It still hurts!! However the dentists kept leaving me for long awaited minutes at a time. It was silent- I hate silence. It makes me think and feel- I can’t deal with silence. In any case, laying there still, nothing to see but a light above me, goggles over my eyes and stuff in my mouth (they put one of those balloon things in there), I could hardly breathe, needed to swallow. It hit me; I was in his (Preston’s) shoes. The doctor would come and go, I’d hear voices. They would do things to me then leave. I missed their presence- even though it hurt. I began to cry uncontrollably- the goggles were filling up on the sides. I kept thinking how nice it must have been to have someone come in at those times and play me music, hang mobiles for me to see, sing me songs, brush my dry lips with cold water, touch me tenderly and kiss my head. It made me realize all those moments I spent with him were probably as precious to him as it was to me. How comforting to realize this. Then the doctor pulled away my goggles and saw my tears- she didn’t question it much. I remember running from the building and getting some fresh air.”
Written by Preston’s mom, Rhonda Montague (North Carolina) in 1996
2020 Update by CDHi: Rhonda went on to have another daughter since this was written in 1996, daughter Brianna. She is also a proud grandma to a precious granddaughter. Rhonda continues to raise CDH Awareness and Preston’s life continues to touch so many. She is often seen at local CDH NC events and we are forever grateful for her support and letting us share Preston with the world.