I recently visited a mother and daughter in my local neonatal unit. For various reasons they would prefer not to be named. To avoid confusion, I will refer to the mother as Beth and the baby as Lucy throughout this blog post.
Beth found her pregnancy quite intense. She suffers from lupus and was increasingly symptomatic during her second trimester. At 28 weeks, it became apparent that Lucy's growth was trailing off and complications seemed more likely. There was a chance that they would need to deliver the baby imminently, however their obstetrician aimed to get them to at least 32 weeks.
Amazingly, Beth made it to 34 weeks before having a cesarean section. The moment Lucy emerged during the procedure was one of Beth's happiest moments. During the chaos of it all, it is so important for all NICU parents (and parents in general) to take in these beautiful moments and keep them with you.
When Lucy arrived, she was taken straight to NICU for monitoring. Apart from being very tiny, she did not need much medical intervention at all. Beth describes the moment when she first held Lucy against her skin as a very special moment.
Beth was discharged after only four days but was lucky enough to receive accommodation nearby. This was something she was extremely grateful for as it made it possible for her to spend more time with her baby girl. Within the first week, however, Beth was suspected to have a bug. As a result of this, she was kept away from her daughter for 42 hours. This was the most difficult part of Lucy's stay in hospital and was heart breaking for her.
Babies who are sick or premature in the NICU are so much more susceptible to illness. It is completely heartbreaking to not be able to hold or be with your baby. Knowing how necessary it is and how it is in the best interest of your baby, does not take away the pain. Grandparents and other family members are generally not allowed to have physical contact with the babies at all.
Beth and Lucy had an amazing support network with friends coming to visit, being supplied with meals and help with transportation to and from hospital. She also enjoyed conversing with other parents in the NICU and advises anyone in a similar situation to "Talk to other NICU parents; they are a great source of information and support and there is a strong sense of community. I met so many other parents who inspired me with their courage and determination."
Beth describes the staff that cared for Lucy as 'brilliant', and they made a great effort to include her partner and herself in their daughter's care. Other benefits the hospital offers to NICU parents, such as free parking, meal vouchers and access to the staff cafe can make a huge difference.
Lucy spent three and a half weeks in the NICU, primarily to make sure she was putting on enough weight. Taking her home from the hospital was another amazingly happy moment for Beth.
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.”