I recently went to see Adriana, a mum of two girls and a step-son, at St Michael's Hospital. Her youngest girl, Adriana-Amy is currently staying there with various difficulties.
When Adriana was 5 months pregnant, she had an anomaly scan which showed that her baby had a blockage within her digestive tract. The scan wasn’t completely clear, and Adriana and her family were left unsure whether or not there was a problem. A repeat scan later in the pregnancy seemed to show that there was nothing wrong.
Adriana gave birth to Adriana Amy at 36+6 weeks. After the initial assessment, it became clear that Adriana Amy had imperforate anus, a condition that makes it impossible for her to pass stool naturally.
A colostomy was performed immediately after birth. This is where a surgeon creates two small openings in the abdomen and attaches a pouch to the intestines to collect any waste. Adriana has to change this pouch frequently to prevent any build-up.
Adriana-Amy will have two more surgeries. Her first surgery will be performed at 6 months to create an artificial opening. They will leave this until she is one year old and then perform another surgery to connect the opening to her intestines. The pouch will be used to collect waste up until this time.
Adriana is devastated that this has happened. She struggles to understand why, especially after having a healthy first child. She asks herself "What did I do wrong in the pregnancy to make this happen?". Adriana-Amy appears to have a horseshoe kidney which could potentially be the reason for this, but there is no definite answer.
Adriana is conflicted and expressed her fears for the future of her baby. She feels too scared to be happy and connect with her baby. She has many visitors and often feels pressure to look and act happy and together. To be able to keep up appearances is very brave and she describes herself as “sad but smiling”.
Adriana is currently making use of the accommodation offered by the charity ‘Cots for tots’ who put up families of babies in NICU for free. She is from Gloucester and although the rest of her family comes up to visit her, she spends most of her time alone with Adriana Amy.
If there was one piece of advice Adriana could offer to mums in a similar situation, it would be this: “Be strong. It does not help [her] if you are not strong. Believe everything will turn out okay.”