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Chester County Press

A mother’s love

08/01/2022 11:46PM ● By Steven Hoffman

When faced with a life-threatening challenge, most people feel lucky if they survive. But when Kristy Thompson faced the challenge of losing her life, and the life of her baby, London, they both beat the odds and survived—and now Kristy is reaching out to help others with a group called Medical Mamas.

Kristy has three children: two-year-old London Kelly, four-year-old Charlee Navarro, and 22-year-old Kristopher Thompson. Kristy calls her youngest child a true blessing. London spent 481 days in the Neonatal Intensive Care Unit (NICU). She has CCMS or Cerebrocostomandibular syndrome, which is a disorder that involves a small chin (micrognathia), an opening in the roof of the mouth (cleft palate), a narrow chest, missing ribs, gaps between ribs, and breathing and feeding difficulties. 

Kristy was 42 when she had London, and she is 44 now. It takes a lot of work to raise three children, and Kristy’s mother, Delores Thompson, helps out with everything, including the extensive care that London needs to overcome her health issues.

Kristy explained, “I don’t know what I would do without my mom and my other children.”

Fighting for life

Kristy fought for her life on the night London was born. Kristy explained, “Due to the COVID shut down and my decision not to leave the house, we didn’t know I had developed HELLP Syndrome. I mentioned the symptoms once I went back to my OB and he and my Endo ordered blood work. I was waiting to get the work-ups done together to reduce the exposure to COVID by being out at the labs, but it was too late. I had to go to the hospital where they did run the blood work and explained the severity of my condition. When they put me asleep for London’s birth, I was told I might not wake up.”

Thankfully, she did wake up. But soon the trauma in the post-op began.

“I remember literally fighting for my life,” Kristy explained. “The nurses were screaming out orders! I was so out of it, but I knew I was fighting for my kids. I knew there were other mothers who had lost their battle with HELLP. Every day I wake up now, I am so thankful and grateful to the Lord for every day he gives me.”

That is a remarkable thing about Kristy. Despite the challenge of caring for a child with CCMS, she is still grateful. 

What doesn’t kill you makes you stronger

Kristy has entered a world where no parent wants to go. It’s a dangerous journey, one she can never stop. If she stops, her child takes her last breath. She is tired, sometimes to the point of exhaustion, and she is always looking for balance in raising three children. But she isn't daunted by the challenges in her life. She doesn't have the luxury of rest or the luxury of a normal life for her and her family. That is not to say that she doesn’t yearn for normal, but “normal” has proven to be an elusive dream. But, every day, consciously or unconsciously, she keeps putting one foot in front of the other for her loved ones.

And if there is a gift in all of this, it is the gift of perspective, and the strength, the knowledge, and the love that they have gained as they faced their challenges.

Kristy, who is a single mother, still has a sense of humor, laughing about a recent visit to the doctor that her son took her and London to. During this visit, nurses and doctors thought her son was her husband. 

Kristy laughed about that— her son, not so much. In many ways, he has become the man of the house at the age of 22.

Kristy has posted a video of her young daughter Charlee giving breathing PT to London. Her comment, “We do this to get the snot out of her,” is poignant. One has to wonder if Charlee will grow up and work in the medical field because it will probably come naturally to her after helping her younger sister out.

And then there is Dolores, Kristy’s mother. Did she ever think, all these years later after the birth of her own daughter, that she would be helping to provide care to her granddaughter? We all know the old saying, “What doesn’t kill you makes you stronger.” This family understands all too well what that saying really means.

‘Good care doesn’t stop, and neither does a good, dedicated parent’

Though the sounds of the life-giving equipment may be bothersome to others, to Kristy and her family, it is a reminder that all is going well for London. It is the silence that sends off an alarm for this group. It’s all-hands-on-deck when that happens, and their training kicks in. Once the machine resumes, it’s like nothing even happened.

It is only in the occasional break that the family can briefly wonder, “What if?”

And yet, in the midst all the equipment, the sounds, and the constant chaos Kristy may find herself in, she has taken what brief respite she has to establish a group for other mothers and parents like her. It is one thing to give when it means pulling money from your pocket to help someone in need, but quite another to give love and concern for others. To spend your spare time researching and finding solutions for others, while you are in the thick of a situation that would bring most people down, that’s just a whole other kind of giving. When asked what she hopes to achieve by forming this group Kristy explained,  “I am educating others about what moms like us need. In London’s case, there are many daily tasks that need to be done requiring two trained care givers. She also has critical, emergent issues that can result in her death, that I see coming a mile away. A newer nurse might not. Therefore, I train the nurses that I do have to pick up on those cues. Also, when you have a critical patient like London, you cannot take shortcuts in her care, you cannot fall to the ways of home care nursing and you must continue to adhere to the way the facility trained you to care for her.”

She added, “You wouldn’t believe what I have seen in just the 10 months of home care nursing. Most of my nurses—I’ve had to fire a few—have never changed a trach or bagged a patient, let alone a patient that does not get bagged the “normal” way. The way you bag London would kill another child, and the normal way to bag a patient would never keep London alive. Nurses don’t know this until they have been put in the situation and then it’s too late. So just because you may have a nurse for a 7 to 3, Monday to Friday shift, that doesn’t mean it is as safe as the [nurse] trained from the hospital.”

Kristy continued, “My mom and I trained for 15 months in two facilities. We took multiple tests, sat in simulation rooms with nurses setting up emergency scenarios and learning how to save this baby. You kill the baby, you fail. It takes time to get your home care nurses on that page, especially with a rare and medically fragile child. Keep in mind I have the only child in the world without ribs, sternum and a xiphoid process bone. Nurses prefer to work Monday through Friday, 7 to 3. Who can always work those hours, including commute time? And then the parent has to ensure that they are back before the shift ends. Not many nurses can do this. Not all nurses want to work evenings, nights, weekends or holidays, but that care doesn’t stop and neither does a good, dedicated parent!”

Quality of home nursing is an issue

Kristy noted that only 12 states recognize the sacrifices that parents in these situations make to take care of their children.

“Moms have to quit their jobs left and right as nurses don’t show up, or leave a shift without notice, or call off,” Kristy explained. “Some kids cannot go to school without a nurse. That raises a brow to another issue: home health care. Why is the work ethic and seriousness of a nursing license taken so different from a nurse in a hospital than one in the home? I hate to say it, but some home nurses will never hold a candle to a hospital nurse. You may get very lucky to find a diamond in the rough, I have one thank God, but it’s as rare as a rare genetic syndrome.”

And that is the problem facing Kristy and other moms like her—and it is usually moms who are expected to shoulder the extraordinary burdens.

“I would like to see the Board of Nursing  make this a priority on their list of “to do’s” because in the short 10 months I’ve dealt with home nursing, I am shocked and appalled at what I’ve seen,” Kristy said. “It’s a liability and a lot of these nurses really shouldn’t be nurses.”

Support for parents who have children with special needs

Kristy is a fighter and she will continue to fight for all moms and parents of special needs children.

She said, “The most important thing I would like to change is to have a place where special needs parents can go for support. Sure, you have social workers that pop in at the hospital or check-in at a pulmonary appointment. I want a place where people who are going through what I and many others are going through can gather and talk and ask questions. A lot of times when you enter a hospital as a NICU/PICU/special needs mom, the support is there and then it fades away. Almost like it’s a welcome speech that gives you hope then, poof it’s gone. It’s been that way at both hospitals for me.”

She outlined her vision for the system of support that could be created to help the parents and caregivers of children with special needs.

“What I see,” she said, “is a place that could be split into territories, then have a main meeting point from there, from each division. This should be a place that has meetings for the parents virtually and in person, to accommodate some of us that can’t leave the house. No one should be excluded! It should be a place where questions can be brought to the table and everyone can help each other out with their own experiences, from social security issues to laws that need to be changed, nursing issues, emotional and relationship issues to the actual health issues of each child. There is a group on Facebook that is super-helpful, but it gets to be a lot when everyone is from different states and each state has different rules and regulations. One very important thing that should happen is to pay the parents who absolutely cannot work and have to stay home with their children. After two years of research, I have found only 12 states in the country that pay the stay-at-home parent to take care of their child. Of course the child should be evaluated by the level of medical difficulty required.  And nursing shortages need to be factored in as well.”

Kristy continued, “Another issue that I feel needs to be changed, is the situation I encountered with housing. We were blessed to receive a housing voucher from the county through a reasonable accommodations program. That means London might need some exceptions to her living situation, such as ramps or one-story living. These vouchers are looked down upon by the landlords and complexes who advertise that they take the voucher. They make it so difficult to use it. I applied at one local complex for example, which states they take the voucher. But they expect you to make two-times the inflated rent, which would have worked out to $2400 a month. If my rent is being covered by the county in full each month, due to me not being able to work since I care for my child, how am I able to bring in $2400 a month? Between my child support and London’s SSI, I bring in $1800 a month, but they wouldn’t take that. That was more than enough to pay my electric, cable, cell phone, and car insurance. If someone has a voucher for the purpose of taking care of a child with disabilities, or someone has the voucher for their own disability, it should automatically be taken. No landlord should be able to refuse that and give it to someone else, because they don’t want to deal with the government.  There must be exceptions and there aren’t many of us that qualify for this program, so it’s rare to have this. Landlords are making money, and they should be held to the same rules that any business owner is held to.”

A group, a book, and a podcast to help others

In the future, her goals are to start a group for parents with children with disabilities, to finish the book she is writing, and to begin a podcast featuring different special needs families.

“If we can watch ’90 Day Fiancé’ and ‘Dr. Pimple Popper’ why can’t my show be out there? I know it would be a success and more importantly a blessing to the special needs community as well as everyone,” Kristy said. “People love to follow a miracle baby. It gives them hope, makes them happy, and makes them reassess their lives and count their blessings! I’d like to put together a group of special needs families and have a network follow their journey. You’d see the medical aspect, the hurdles we face as special needs families, how siblings handle it, the sacrifice, the relationships that are affected, the ups the downs. It would bring a much-needed light to the challenges in this community and what we should be changing. I just need to find the right person to pitch this idea to a network and I know we’re in. We’d help so many special needs families and bless a lot of people all over the world.”

For now, she is working on forming the group as a way for families to come together and get the support, information, and help that they need. There are plans for monthly podcasts and lots of other resources.

Medical Mamas and more

Mothers like Kristy are a unique breed, and she is trying to bring about positive changes, one newspaper article, group formation or podcast at a time. The ‘Medical Mamas’  are on the front lines fighting for child care improvements. They are fierce mothers who show up to every procedure, every appointment, and every conference with a team of doctors. They fight for their children, they exist for their children and they will not quit until they can secure the health care they need for their children.

Kristy knows pain intimately, but she is one of those rare, strong women who won’t give in to feelings of weakness or fear.  On her best days, she writes to help others. Here’s an example of the empowering messages she shares:

“Just a little “writing” by yours truly, aka a fellow single, medical mama…

I know it gets lonely. And you get angry. And thank the lord we don’t have much time to dwell on that, but man those accomplishments your child has made is all because of  YOU! No one can ever take that from you! 

“I’m sitting back, holding my baby and thinking about how much I’ve gone through in such a short time. I’ve changed jobs and careers, had a high risk pregnancy, endured fake friends, dealt with conflict between my siblings, financial burdens, and so much more. But I need to focus on the positive things. My older daughter is a fighter and she is happy!!!! My son turned out to be an amazing adult, my mom and I are as close as ever. I have a few good friends in my life.

“You are strong, you are indeed an angel! Not only did God make you strong enough to take care of a medically fragile child, but he made you so strong you can succeed as a single parent.”

“God gave you help in the form of solid friends and family members, churches, social workers, and great people in your community to fill those voids. God gave you the help in aligning things to work out just the way He knew it should to benefit your situation.”

If you would like more information on joining the group, check out Medical Mamas on Facebook.  You can also email Kristy at [email protected].