Sarah Jean’s Medical Expenses

Hello! I am raising funds to cover the extensive medical expenses that we will be facing in order provide our daughter with the medical care necessary to improve her quality of life while living with VACTERL association.

The immediate reason why we are creating this fundraiser is to help cover the expenses that will be incurred for Sarah’s trip to Children’s National for her surgery, and further testing. We will need to arrive in D.C. by 1/11/23, and she will be admitted to the hospital until at least 1/26/23. The funds raised here will immediately cover extremely expensive insurance premiums that will cover this doctor/hospital, all medical bills incurred during her stay, airfare, lodging (if we are unable to obtain assistance through Ronald McDonald House) and all other expenses resulting from her high level of care. 

Beyond this upcoming trip in January 2023, Sarah will unfortunately experience years of ongoing and extensive medical care. Any support provided to help support her journey is so meaning and immensely appreciated.

For those who are interested in learning more about Sarah’s journey thus far, here are some more details. Sarah Jean was born 8/18/22 at 37 weeks + 2 days via planned c-section due to high-risk pregnancy. She needed some CPAP help to pink her up right after birth, but left the OR with me and everything looked healthy at that point. On 8/21/22, her axillary (armpit) temp unexpectedly dropped to 97.4, and despite warm blankets and skin-to-skin, it stayed low. The nurse took her to the nursery to do a rectal temp and put her under the warmer to try and bring up her temperature. At that point, we weren’t concerned as they explained that it sometimes happens with babies born early. So I decided to take a shower and tend to myself for a bit. About 30 minutes later I was back in bed, and the pediatrician came in and told my fiancé to sit down with me. She explained that while trying to take a rectal temp the nurse noticed that my daughters anus appeared to be in the wrong place, and they determined that she has an imperforate anus with a perineal fistula. We were told she would be immediately transferred to the NICU at Sacred Heart at Riverbend in Springfield, OR. I was also immediately discharged so I could follow her down there. Watching the NICU transport team prep and load her for transport was a surreal and terrifying experience that I wouldn’t wish on anyone.

Once she arrived at the NICU, they completed ultrasounds of her abdomen, spine, and heart. Her echocardiogram did show a small hole in her heart, but she is too small yet to determine the severity. Her ultrasounds showed that she has a tethered spinal cord, and cysts in her kidneys. We were told she will need surgery to correct the IA at around 4-6 months old without the need for a colostomy bag. After being trained by the surgeon, we are now performing dilations of her fistula 3x each day in order to ensure that she can continue to pass stool without the need for a colostomy bag.

At 7 weeks old she was unexpectedly admitted to Doernbecher Children’s Hospital in Portland, OR for a severe kidney infection that had thrown all of her electrolytes dangerously off balance. They believe she has vesicoureteral reflux where urine from her bladder is backing up into her kidneys. Due to her perineal fistula she will be prone to recurrent urinary tract infections leading to more server kidney infections and is now on daily long-term prophylactic antibiotics. She will be having further testing completed to determine the severity of her reflux in December 2022.

During her hospitalization, it was also determined that she was having ongoing choking/aspiration spells while eating and was diagnosed with esophageal dysmotility and acid reflux. So she is now exclusively bottle fed and we are adjusting the thickness of the liquid in her bottles with each feeding.

Sarah is currently scheduled to see Dr. Marc Levitt at Children’s National Hospital in Washington, D.C. This doctor has literally written the book (more than once) on pediatric colorectal surgery. After speaking with him, he believes that Sarah is an excellent candidate for his program and a new technique that he has developed. The multidisciplinary team at Children’s National will evaluate all of her current diagnoses, and explore further to see if there is anything else that may have been missed. 

Thank you so much for taking the time to read Sarah’s story and for considering making a donation to support us on her road to a better quality of life!