Allow me to introduce you to my grand-daughter, Chloe Alessia Elizabeth Lantz. Chloe was born on April 13, 2018 weighing in
at five pounds, nine ounces. From the beginning Chloe was having abnormal symptoms such as rapid heart beat, fast respiration and low blood sugar. She was found to have an infection, IV was started and tests began. After bloodwork results she was air lifted by helicopter to the IWK (Halifax). Chloe was monitored at IWK and examined by cardiologist. She was diagnosed with “Complete Atrioventricular Septal Defect (AVSD). This defect affects the valves between the heart’s chambers and there are holes between the right and left sides of the heart and the valves that control the flow of blood between these chambers are not formed correctly. In Chloe’s case she has only one value that did not develope correctly and is located in the center of the heart. Her septa (wall dividing the chambers) did not grow all the way up to meet the center of the heart. She has four holes between the chambers. In AVSD blood flows where it should not flow (through all chambers of the heart as well as to the lungs). This can lead to congestive heart failure.
She will need surgery by the time she is 4-6 months of age. This surgery (patching the holes, creating two heart valves) has a 70% success rate. In 25% of cases additional surgery(s) will be required. She will require life long monitoring. Chloe had labored breathing and has been on medication to help with reducing the amount of blood in the lungs.
On May 12 Chloe was transferred back to the IWK by ambulance. She was bleeding from the bowel so numerous tests were performed, including echoes, ultrasounds, spinal tap, pic line (internal IV) blood work and more. She was this time diagnosed with enterocolotis due to a severe dairy allergy. She was unable to eat and began to lose weight. It was necessary to put in a NG tube for feeding due to the heart failure. They began to fortify her milk and after a couple weeks she began to start gaining. She has now begun to experience acid reflux due to the NG tube holding the spinkter muscle open, allowing stomach acids to enter the esophagus. And she is now in congestive heart failure and will be monitored closely by the cardiac team at IWK. In her short life she has already endured so much.
After a three week stay in NICU Chloe was released to go home on June 4. Her NG tube will remain. Her parents (Kari and Michael)have been trained in all aspects of her care. Since her birth the family has made numerous trips to and from the IWK for tests, treatment and monitoring, including the three week stay in NICU. They have been faced with expenses ranging from gas/travel, parking, hospital stays, food and medications. Chloe will require continued appointments, tests, hospital visits and increased medications until her surgery can be performed. This will mean another extended stay at the IWK. Even after surgery there will be on-going expenses. She could require routine care and monitoring for the rest of her life.
Chloe had her heart surgery on August 28/2018. During
her surgery an additional hole was found that required patching. Surgeons created two valves, repaired her septa and patched three holes. Her surgery took more than twelve hours to complete. After surgery her family was told that both of the valves and one of the patches were leaking and that additional surgery may be needed.
Chloe had JET (Junctional Ectopic Tachycardia) which a miscommunication between the upper and lower chambers of the heart causing abnormal heart rhythm. Because of this chest had to remain open. Due to a few complications during her surgery her hospital stay will be extended.
Since the surgery her chest has now been closed, She is out of JET and is making progress daily. Chloe still remains in ICU at the IWK. The extended stay has meant that her parents have depleted their savings due to travel, missed work, food, parking and a variety of other things.
Chloe is doing well but has a long road ahead of her. The expenses of this family will be on-going. Once out of hospital there will be numerous medications, IWK appointments, gas/travel, child care for big brother Josiah and the possibility of more surgery and more extended hospitals stays. This will be determined by future monitoring.
By sharing Chloe’s story it is my hope that you will stand with this family with your prayers and financial support at this difficult time. Chloe’s middle name “Alessia” means warrior. And she certainly has been a fighter through all of this struggle. Won’t you help Chloe in her fight for life.
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