Aria's Story

Aria Caulkins' story began when she was only a few days old. A red area with a dimple on her lower back quickly revealed it was a hemangioma, or "strawberry birthmark." A hemangioma is a cluster of extra blood vessels that can be harmless but can also indicate an underlying problem, especially when a dimple is also present. Due to the large size and location, there was concern that it was associated with her spine. What should have been a joyous time welcoming a new little girl to their family quickly turned into a time of extreme worry and fear for Aria's health.

At 10 days old, Aria made her first trip to urgent care. The hemangioma was starting to look more red and infected. At this appointment, they were told an MRI would be necessary to determine if there were other hemangiomas in any other organs and any underlying problems with her spine and brain. They determined her spine was tethered but wanted a follow-up MRI where Aria would need to be under anesthesia to evaluate further and determine the course of surgery. Surgery on their baby. On her spine. It isn't lost on a lot of us, especially those with children, how scary of a surgery this will be. In the next eight months, she would have 5 MRIs and a CT. Her parents would also have to manage her hemangioma, which was painful and difficult to keep clear of infection due to the size and location. She would need to be on medication to manage the hemangioma and make trips to the Twin Cities for laser light therapy. In the last eight months, Aria has had countless appointments revealing how challenging her journey will be and adding to the fear for her future.

Doctor's determined that Aria did have a tethered spinal cord, a pseudo sinus tract, a syrinx, and a fluid-filled cyst within her spinal cord that required surgery. Over time, the cyst can enlarge and damage the spinal cord causing pain, weakness and stiffness, among other symptoms. Also, a tethered cord prevents the spinal cord from moving to keep up with the lengthening of the spine as it grows. The results may be nerve damage, severe pain, and the inability to walk. In addition to an already difficult surgery, Aria's spinal cord was tangled in a chaotic lipoma (fatty tumor). A chaotic lipoma is much more challenging to remove and increases the risk of the cord re-tethering as she grows.

Aria's parents, Natalie and Brandon, had four different consults with surgeons at various Children's Hospitals to help them choose which they would entrust to do surgery on their baby. Each visit required trips to the Twin Cities with Aria in tow and often more tests at each surgeon's request. Finally, a decision was made to have her surgery at Children's Minnesota on March 1st, 2022.

Aria's spinal surgery was completed with wonderful news that the surgery had gone as well as they hoped, if not better. Finally, a win for Aria! She healed in the hospital for four days and then was allowed to return home. After returning home, the incision site started to look very red and infected. An oral antibiotic was started and was hoped to be all that was needed. She then started leaking clear fluid from the incision site, and the sutures started to pull apart, which was later determined to be spinal fluid and infection. She was admitted to Sanford in Fargo and given more medication to try and control the healing but was ultimately transported back to Children's Hospital in the Twin Cities via ambulance. The infectious disease doctor was very concerned about meningitis due to E.Coli in the fluid and ordered a PICC line to be placed in her arm and continuous antibiotics for several weeks. Another surgery was required to clean the area and resuture/close the wound. Her second spinal surgery was completed on March 9th, 2022. They were again hopeful to return home with the PICC line antibiotics to continue healing. Unfortunately, shortly after her second surgery, Aria began leaking spinal fluid again, and the doctors decided she would need to be sedated for three days to keep the incision site from moving and reopening. Sedation is very difficult for an eight-month-old who wants to move and play, so finding a level that works for her without compromising her blood pressure has been a challenge.

Currently, Aria is at the Children's Hospital in the Twin Cities under sedation, continuing to heal, hopefully for the last time in this part of her journey. Of course, the worry for her future and any other surgeries will always be present as Aria grows, but getting her healed and home will be a significant milestone in her journey. Aria is such a smiley, giggly, sweet little girl who has endured way more than any baby should have to in her eight months of life. Her parents, sisters, and loved ones have endured so much fear and worry for this sweet girl.

A countless number of you have prayed and continue to hope for the best possible results for little Aria throughout her life. The Caulkin's are very hard-working people and don't want to burden others with their situation. However, this wasn't something they chose, and so many of you have reached out wanting to donate for Aria. This platform is a convenient way to do so, and any donation, words of support, thoughts of hope and prayers would mean so much as Aria continues to fight and heal.

You can also visit Aria's CaringBridge for updates on her journey. https://www.caringbridge.org/visit/ariacaulkins