Kirsten Guptill

Kirsten’s Story

“We love Kirsten so very much! She brings so much joy into our family!”

Kirsten Guptill, Trisomy 18, 4/2/1990, Orting, WA

KirstenWe were living in Kailua, Oahu, Hawaii at the time with 5 children. I had just turned 39 years old and found out I was almost 2 months pregnant with Kirsten. (Change of life baby.) I had an amniocentesis at 4 months. We learned we were having a girl and she was t18. I have to say they were very kind and compassionate and supportive of our decision to go to term, abortion was out of the question. Since I had a heart condition I was closely monitored and well as the baby. My placenta started tearing at 5 months. Long story short, the umbilical cord was very short, resulting in the placenta tearing. I had ultra sounds and they found water pockets around most of her organs. There were none 4 days before she was born. We are of the LDS faith and we are Christians and had tremendous faith.
Kirsten was born at 33 weeks to the day. She was 4 lbs.2 oz and 17″ long. She was in NICU for 3 weeks and the Intermediate nursery for 3 more weeks. She went home at 6 weeks old at 4lbs.14 oz. Kirsten had CHF at 4 months and went into hospital and was put on Lasix and one other medicine (don’t remember the name). At 7 months she had a stroke due to severe dehydration. We won’t go into that long story. It was just before Christmas and all her doctors were on holiday and poor choices were made from doctors and we’ll leave it that. The stroke caused Kirsten to have severe sleep apnea. When she fell asleep she forgot to breathe. She was on oxygen for two years. She has only had pneumonia, once lobar at 12 months and once bronchial at 13 months of age.
Kirsten had corrective eye surgery around 6 or 7 years old for lazy eye in both eyes. It was 100% successful. Kirsten also was born deaf in her left ear, no hearing. She has normal hearing in her right ear. She wore a hearing aid for two years (about age 5-8). She was quite tiny. She was like a baby for her first 3 years. Her ear canals were tiny and size ‘0’ ear drum. Once she hit her growth spurt her canals and drum grew and she no longer needed her hearing aid.
At about age 15 she had her adenoids removed. They left her tonsils. The adenoids obstructed her airway causing sleep apnea. Once they were removed the apnea was resolved.
Kirsten was about age 16 or 17 when she came down with severe C-Diff (clostridium-difficile-colitis)infection and almost lost her life. Again, poor diagnosis and treatment from a GI doctor, which I fired and got a great one. It lasted off and on for a year. The worst nightmare of our lives to say the least! It emaciated her. This resulted in having a peg tube place for nutrition. I have to say here that the Mic-Key peg tube did not work for her. It caused too much skin granulation and even cauterizing the site caused the area to become concave. We switched to the Nurtriport peg tube and she’s never had that skin granulation problem since. Kirsten will be on a probiotics for the rest of her life. We are very proactive with that treatment. Antibiotics can cause yeast infections in the body and hers happen to land in her colon.
Kirsten had a Corpus Callosotomy at age 17. She had Drop seizures at least 3xday for 15 months. Unfortunately those Drop seizures caused her to lose over 50% of her physical abilities, some of which will never return. She used to walk with a walker and ride a tricycle. She still crawls and pulls herself up. She has crawled so much that her left patella, knee cap, slides off and I have to pull it into place, we’ll leave it at that. Her neurosurgeon told us she had a 70% chance of the surgery being successful. They separated the Corpus Callosum, the lining that separates the L & R hemisphere of the brain. They left the ends attached as they control leg motor movement. The surgery was 100% successful and she does not have Drop seizures. We were told her success is rare. They told us she may have Drop seizures periodically.
Kirsten had a VNS implant (she’s had 6 as of 2014) for Myoclonic seizures. She was given an 80% chance of success. It’s worked very well for her. We do have to keep her away from vibrating toys and she has to be 10 to 12 inches away from an electronic device, computers, etc. It sets the VNS device off. Her setting is 14 seconds on and 30 seconds off. I causes a small vibration in her throat. When a seizure starts you swipe a magnet (it comes with the VNS) across the implant and it is supposed to interrupt the seizure. Cyberonics of Houston, Texas, USA makes the device. Cyberonics told us that Kirsten was the first t18 patient to have the VNS implant . It’s a small pocket watch size disc, battery, they implant in the upper left chest below the collarbone and to the left side of the breast near the underarm. The VNS usually lasts about 5 years but because Kirsten’s settings are so high they don’t last 5 years. They are always improving the battery and quality. Hers last about 2 years and this last one is going on 2-1/2 years so far, so great!
Kirsten has Grand Mall seizures and Myoclonic seizures which she will be on medication for life. We also give her 5 Essential Oils which we apply every morning and at bedtime and when a seizure comes on. The oils will usually stop the seizure in less than a minute. She had been in her neurologists office for an appointment and had a seizure start and I’ve immediately rubbed the oils on the bottom of her toes and the seizure stops. Her doctors are so impressed with the results of the oils. Before we used oils we had to give her Diazepam (Diastat) 10 ml 3 times a week. It would put her out for 6 to 8 hours. Since we started the oils we have not used the Diazepam. Success!
Kirsten’s latest physical concern was her digestive system. Two years ago she was diagnosed with Parastolic Gastroparesis, basically the digestive system stalls and nothing moves out of the stomach and colon and she throws up. She was on Reglan and Previcid for two years. She no longer has that condition and is no longer on those meds. What did we do? We changed her diet. I use Aloe Vera Gel in her juice, oils, and other things that move her system and she eliminates with the help of an enema. Since birth she has never been able to eliminate very well. Her sphyincter muscle works fine. She just needs something to initiate the start of elimination. Her GI doctor is so happy she is off those two meds. So are we!
We love Kirsten so very much! She brings so much joy into our family!

Added 2/29/2016: Did we having nursing care? We has Respite care for about two years about age 9 & 10. Kirsten’s first respite caregiver was an RN, then she had a CNA. She came once a week for about 3 hours. Mom is pretty much her case manager, etc. I am very capable of taking care of managing her care. Her dad helped when he got home from work.
Kirsten was born with a compromised immune system and all her life we have had to be very protective and careful with her help. When she was in school, they would call if anyone was sick and Kirsten stayed home. When she was born it took her two years to develop enough immunities to her own home environment. If she gets around anyone with a croupy cough, it could be fatal. We have been very lucky to have her as long as we have. She gets her flu shot, along with her mom and dad, every single year. She’s had the flu a few times and it was very serious. It took her until she was 8 years old to complete her immune shots. The DPT was slow going as it made her very sick. As she got older, her health improved.
Kirsten is not currently in any adult program since she graduated from high school, life skills classes. This is mainly due to her fragile health. She enjoys being around her family and our grandchildren. She loves children! We take her out for rides, shopping, but not in the winter months, too many bugs out there. She loves traveling in our RV!
As far as mobility, Kirsten crawls everywhere. She likes her favorite toys, TV shows, movies. One of her favorite places to be is in the double recliner