December 31st 2015 we brought into the world our beautiful, tiny, perfect baby girl, Braelyn. She, from that day was the best thing to ever happen to us. Everyday with her is an adventure but our biggest one started September 21st 2017. That morning she woke up with her eyes super swollen, in a panic I called the Dr. And they said to bring her in right away. Without so much as looking at her they diagnosed her with pink eye. I left confused as I didn’t believe it was that there were no normal symptoms like redness or pus. But I did as the dr said and began giving her eye drops and for awhile I thought they were working by night her eyes would no longer be puffy, little did I know it was gravity doing its job. A few days had passed and I was now certain it was not pink eye, fast forward a few more days and a couple more dr visits we were finally being sent to Prince George to the paediatrician.
Oct 5th 2017 we met with the paediatrician. He took every test imaginable and came back after what felt like an eternity with a diagnosis of Nephrotic Syndrome; a kidney disorder that causes your body to excrete too much protein in the urine which then leads to low albumin and swelling. It can also cause high blood cholesterol, blood clots, poor nutrition, infection, high blood pressure and renal failure. Childhood N.S can start at any age but usually begins between the ages of 2 and 5 years. It is a rare condition that effects about 16 out of every 100,000 children at any given time. We spent the next 5 days watching our baby receive bottles of human albumin and lasix (medication that makes you pee) through iv. We didn’t know then that this wasn’t going to be our only admission, she has now been admitted into hospital over 30 times to receive the same treatment, some stays are as short as two days some lasting weeks.
She was referred by the paediatrician to a nephrologist in Vancouver at the B.C children’s hospital. They meet us monthly in P.G for clinics and check ups. They first started her on prednisone in hopes to get her in remission. Remission is considered 3 consecutive days of negative protein in the urine which we monitor by doing daily urine tests. She reached remission quickly on the steroids which then followed quickly with a relapse (3 or more consecutive days of + protein). This repeated 3 times until she finally stopped reaching remission at all. At this point they decided it was time for a kidney biopsy.
April 23rd 2018- We made it to Vancouver for her scheduled biopsy. I was dressed in my yellow gown, gloves, boot covers, and hair net as I walked my baby down what felt like the longest and darkest hall until we made it into the operating room filled with nurses and drs all standing around the operating table. I held my baby while they gave her anesthesia until she went completely limp. It was easily the worst feeling I have ever felt. I was quickly pushed out of the room so they could begin surgery. It was a quick 40 minute procedure but sitting in the waiting room it felt more like days. Results would take awhile so they sent us home with a new medication to start, Tacrolimus a immunosuppressive drug.
She never reached remission with tacrolimus and we spent most of the time in hospital to get all the fluid off when she swelled, which was weekly. Sometimes, there would be 2-3 pounds of fluid inside her little body. We all agreed it was time to stop tacrolimus and start something new. The nephrologists decided we would wait to start something new until we did another biopsy. She wasn’t off tacrolimus long when we were driving to Vancouver for the second biopsy and we only made it as far as Prince George when Brae started vomiting and looking very lethargic so we decided we would stop at the hospital there and make sure everything was okay. Blood work showed a kidney injury and that her kidney function wasn’t good so we were then airlifted to Vancouver.
October 18th 2018- Braelyn had a second biopsy. We spent 3 weeks in the hospital while she healed from both the injury and the surgery.
Both her biopsies show that her Nephrotic syndrome is caused by minimal change disease. This is the most common cause of N.S in children. Minimal change disease results in abnormal kidney function, but when the kidney tissue is examined under the microscope it appears normal or nearly normal. The cause of the abnormal function typically can’t be determined.
It was decided that the injury was likely from stopping the tacro so it was restarted and hasn’t been stopped again. She has been battling this terrible disorder for so long, we’ve made so many trips to hospital the dates following all became a blur. So since her last biopsy they have tried other medications. Rituximab, a medication used to treat certain autoimmune diseases and types of cancer. She had two doses through iv which we had to travel to Vancouver for. It took 13 hours to administer each time. After that didn’t help they started her on a 12 week course of Cyclophosphamide which is a medication used as chemotherapy and to suppress the immune system all while taking oral lasix and iron daily (n.s caused her to be anemic). We aren’t sure what the magic trick was but Braelyn has been out of hospital since July 9th, 2019 however remains in constant relapse. Our house now feels like home. Our beds are no longer stiff cots in the corner listening to the beeping of the machines. We eat home cooked meals and not hospital mush. One day we hope to reach full remission to give her and her little body a well deserved break from it all until then we celebrate every small victory!