Patient Stories

Makenna Caroline's Journey with M-CM

One late evening in March of 2008 I was sent by life flight to Wichita, KS from our small town of Manhattan, KS to give birth to a fighter. Makenna was born at 32 weeks, and spent 11 days in the Neonatal Intensive Care Unit at Wesley Medical Hospital. Upon her release one day shy of her father's birthday we packed up the car, full of baby gadgets, bottles, and toys and drove home. It was not until 6 months later that I learned a new word in my mommy vocabulary that would become a word that until the day I depart this earth I will never forget. You ask yourself, well what word could it be? The word that will forever be in my life, and the life of my family is "HYDROCEPHALUS". You see to people not familiar with the day to day struggles of parenting an infant with special healthcare needs such as Makenna, the words I learned were not your usual parenting terms of the first year of parenting a new child. The words I learned were medical terms, terms that would allow my daughter to fight for just one more day, one more hour, one more second.

Makenna Caroline began her HYDROCEPHALUS journey on October 17 2008 at 3:00pm at Wesley Medical. This was to be her first hydrocephalus related surgery to place a VP shunt. Makenna had complications in this surgery due to something called Malignant Hyperthermia. Her temperature on the operating table leveled off at a wooing 113, that is no typo, it was enough that would and should end your life. The doctors came out to inform an already nervous parent duo that they had placed our small 6 month old daughter in ice to "rapidly" bring her temperature down. You could say that was the start of us learning how to breathe through the fear---so we did. Makenna's temperature slowly got back down to 107 degrees, within the first 45 minutes, then 104 within the next 45 minutes and then almost an hour later back down to 99. It was almost 2 hours before her temperature got back to normal. At this point I did not know if the surgical placement of the shunt had worked or not. Finally at 10pm in the PICU I was able to see that beautiful angel smiling back at me. This was surgery 1 of 23 in a total of 4 and half years. Makenna had her first VP Shunt revision due to her shunt malfunctioning in the same year. This time December 23, 2008. She went in to surgery at 1:00 pm on December 23rd, MH precautions were taken to reduce the chance of fever. Makenna came out of this surgery and went to the PICU. She was released on Christmas Day.

In May of 2009 a Diagnosis was finally on record by the medical genetics team at Children’s Mercy Hospital. Makenna had a diagnosis of M-CMTC, now referred to at M-CM. After her first 4 months of being on the planet, I knew something was different about my girl. She smiled and cooed a lot, never saying too many things or making much eye contact with people in her world. I started to research. As any mother would I plopped down on the sofa, laptop on a TV tray and baby in my arm and I started the long search of figuring out what was going on with Makenna. I ran across a parent website called MCMTC. I knew then by reading parental stories I had hit the syndrome motherload!! BINGO we have a winner. Makenna had features that were almost identical to the other children on the website. Low nasal bridge, frontal bossing, low set ears, shadowing above the forehead, syndactyl, mosaic markings on trunks, hemihypertophy, dough like skins folds, red/purple discoloration above her right eye, and a stork bite on her lower back on the spine(which we later learned was an indicator of a tethered cord). Makenna also had Chiari Malformation, and Severe Epilepsy. At age of 2 years she was non ambulatory and could say only two-three words.

Once we arrived to the hospital that May to confer with MDs, I had printed off all of the 14 articles about M-CMTC. I was loaded with questions…however not much to my surprise I knew more than they did….I then became my daughters biggest ADOVCATE. From that moment on we became a DYNAMIC DUO, I was the Robin to her Batman.

On November 11, 2009 after 5 air lifts from Dodge City, KS to Kansas City Children's Mercy Hospital, it was evident that the town we lived in could not compete with her syndrome. Makenna and I packed up our house and made a move that would save her life. We and moved to Indianapolis, IN where Makenna went to Riley Hospital for Children.

It was as if God was watching this trip and she had an appointment with Marilyn Bull in Pediatrics who finally listened to a worried mother who knew something was dreadfully wrong with the shunt, yet doctors upon doctors said it was fine. After a routine CT of the skull and abdomen, the shunt indeed was blocked. Makenna underwent surgery 3. Makenna's hydrocephalus story went something like this. Place a new shunt and wait for 30 days before the shunt would fail or be compromised repeat. This song and dance went on for the next 2 years until I researched and begged for something else. The something else was the "last resort" for most Peds Neurosurgeons and it was to complete and EVD. This surgery worked for a total of 9 months which allowed Makenna to not have any device in her body. We thought we were on the upswing.

With a severe end of the spectrum of M-CM Makenna endured feeding difficulties, continuous battles with pneumonia, bronchitis and respiratory distress for months on end. Makenna also had aspiration pneumonia and eventually a G Tube was placed when she was 2 years old. Makenna began on the upswing at the age of 3. She had an EVD placed and things were looking better. Her seizure activity had decreased from 15 episodes a day to almost 3, which was a blessing. Her breathing was better and all around she was back to her happy loving, smiling self. Then at about 3.5 years the EVD failed and we were plummeted back into the world of shunts. We went through this battle for months on end. My super warrior was getting weak….but she SMILED and told me she wanted to fight a little longer…so we did.

We opted to place yet another shunt in July of 2012 this was shunt 21. This shunt lasted 3 total weeks before it failed. The shunt was removed for 14 days and another shunt was placed, shunt number 22.

At this point in time Makenna was at Children's Hospital Number 3 in Dayton, OH. This would be her last go around in the hospital. The doctor said he could place one more shunt and we could see how she would take it. This shunt lasted 3 weeks. Cue the elephant in the room. My sick daughter, who suffered a stroke during the last procedure had now lost movement in her right side, the doctor said there was nothing more he could do. Finally he sat down by my daughter's beside and explained to me my options---and how few they were at this point. Putting in another shunt would by me maybe 2 weeks, her head was covered in scar tissue, her stomach the same. There were no spaces left to place a shunt. The only option left was no shunt at all. The doctor on the fateful day would say another word that was in now in my wheel house of words, "Palliative Care". To this day as I type this sitting staring at the picture of my gorgeous child, the words never get easier. I took my princess home 2 says later. We planned time with the family over Labor Day and everyone spent the weeks with Makenna Caroline Clark. On September 13, 2012, Makenna Caroline Clark took her last breath after she gave one good laugh and one bright eyed look up at her tearful mum, and she closed her beautiful brown eyes and went to sleep.

Brandy James Proud Mother of Makenna Caroline aka “Stinky Feet”

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About Heidi Heidi Frost lives in the United Kingdom. She is married with three children. The eldest, Jack, was pre-natally diagnosed with profound disabilities when Heidi was 28 weeks pregnant, although he was 8 years old before he was correctly diagnosed with M-CM. Jack is now 17.

Heidi is a full time Mum to Jack and his siblings, and spends her time caring for Jack, attending medical appointments and negotiating the minefield of obtaining necessary services for her son.

Heidi created a website about Jack in 2005 and found that telling Jack’s story was an incredibly positive and healing experience and she is looking forward to assisting other M-CM families to do the same. In her spare time she enjoys writing about her life with Jack on her website and spending time with her husband and children.