When my husband (Joe) and myself (Laura) found out we were having a little girl at 13 weeks pregnant, we were over the moon with excitement. She would be the perfect addition to our little family as she would be joining her big brother, Jonah, and completing our family of four.
At our 18 week ultrasound we saw a seemingly healthy little baby moving around the screen. She had a strong heartbeat and looked “normal.” A few days later, we got the call that we would need to have a level two ultrasound in Pittsburgh for a “dilated bladder.” We scheduled this ultrasound for three weeks later, and the findings of this screening would change our lives forever.
As soon as the baby popped up on the screen, I could sense something was wrong. I noticed a large black circle in the center of the baby’s abdomen. The specialist came in and told us our daughter had a serious, yet treatable birth defect known as Lower Urinary Tract Obstruction (LUTO) which was keeping her bladder from emptying. She said it could either work itself out, require in-utero surgery, or possibly surgery post-delivery to fix the obstruction.
From that point on, we had ultrasounds every 2 weeks. At 27 weeks pregnant, the specialists had some additional concerns and thought maybe they were missing something. Their biggest concerns with that the baby was a girl when LUTO is prevalent in boys and that my amniotic fluid was increasing, rather than decreasing as they would expect with LUTO. After more research and scans, at 29 weeks gestation, we were told that our baby did not have LUTO, but rather something much more serious that affected her entire digestive system. We were told that she had MMIHS, that she would never eat, and that her prognosis was very grim with a multi- organ transplant being our only option. (All things we later found out to be untrue!!!) Needless to say though, upon hearing this news, we were shocked and devastated.
After that appointment, we began doing research. I read every article I could find on the disease, and found and contacted multiple families of children living with the disease. I joined an online support group, and we had a consultation with the director of Intestinal Care and Rehabilitation at Children’s Hospital of Pittsburgh to make a “plan” for after our daughter was born. A bright light was that CHP had 5 other patients with MMIHS and they were quite knowledgeable about this rare disease and treatment.
On September 14, 2016 at 36 weeks pregnant, I gave birth to Anabelle Elizabeth Bisping. The next day, Anabelle was transferred to Children’s Hospital of Pittsburgh. She spent 8 days in the NICU and was then transferred to the Intestinal Care Unit. After 2 weeks of testing, doctors confirmed the suspected diagnosis of MMIHS. At one month old, she had surgery to allow her to empty her stomach as well as to place a central line. She has little to no motility through her digestive system, and she receives nutrition from TPN and Omegaven.
While I was told I would never be able to nurse Belle, I continued to pump and push for Belle to be bottle fed tiny amounts (teaspoons) of breastmilk a few times a day to keep up her oral skills. After her surgery, at 35 days old, I was blessed to nurse Belle for the first time. She continues to nurse 4 times a day, and she loves it, although we believe she is getting very little nutrition from breast milk.
After two months in the hospital, we were able to take Belle home. We had a scary experience only a week after she was home when she was air-lifted due to a mechanical error with her line. The next day, Belle had surgery to place a new central line, and very serious complications occurred. Belle had to be taken back for emergency, life-saving intervention surgery following the initial line placement. God protected Belle that day and we were so grateful to be able to take her home again a week later.
Anabelle is a very happy and sweet four month old baby girl. She loves nursing, swinging, and playing with her sweet two-year old brother. She has changed our lives in so many ways and we are grateful for every day we have her at home with us. Our faith in God and His plan, the amazing support we have received from our family, local community and MMIH families, as well as the incredible care from the doctors at CHP have all helped us every step of the way. Her and her brother are the greatest blessings in our lives. You can read more about Belle’s story on my blog www.forhopeandhealth.org.
The verse I had hanging over Belle’s hospital bed and that I now pray over her frequently is: