Morbidities? What are they really?
You may have heard the term morbidity before – but what does it really mean?!?
A minor or major morbidity is a symptom, physical state, or medical problem that is considered to be outside the normal well-being realm.
NICU Infants
Many of our NICU babies either those born preterm or even those delivered full-term can have minor or major morbidities.
The complications of prematurity or any complex condition that the infant undergoes as well as the impacts of these complications increase the risk of morbidities. Preterm and term infants survival and subsequent development are affected by the complications.
What are some common morbidities for NICU infants?
Some minor NICU morbidities include cognitive deficits, learning disabilities, attention deficit disorders, behavioral problems, motor delays, hearing sensitivities, or even incredibly sensitive feet.
Major NICU morbidities may include cerebral palsy, visual impairment, hearing and cognitive impairment.
Why is it important to discuss NICU morbidities?
I think it’s important to openly talk about some of the common morbidities together.
One – so you do not feel alone as a parent. Most babies that have spent a lengthy amount of time in the NICU will have some morbidities. You and your baby are not unique to this.
Two – We are often so thrilled to just get our baby home that we are not prepared for the difficult journey at home.
The developmental specialist or Neonatal Care Team may discuss the possibilities of any major or even minor morbidity with you, but we are not always listening or even if we do listen, we are not actually prepared for it. Or even if we feel as though we are prepared, we did not know how much it would affect us or our children.
Follow-ups for your child
Your child will be followed closely once they come home from the NICU. They will have screenings done and may need regular physical therapy, occupational therapy, speech therapy, or early childhood interventions. These services are available to help you and your baby.
Remember that you know your baby the best! So if there is something that you are concerned about, bring it up! You are their advocate!
Many of the common morbidities may not be apparent until your child nears school-age. There is a large incidence of preterm infants with learning disabilities. So continue to take your child to the follow-ups and evaluations – they are there to help!
Ways to deal with your child’s morbidities
Our son was a 23 4/7 weeker. He had a fairly benign NICU course considering how early he was. He actually did not qualify for a lot of the therapies offered until he was around 2 years old.
We were always thrilled once the therapists left to hear how well he was doing. I remember asking one of them, “you would tell me if he really needed additional therapy, right?” I just wanted to ensure that we were doing all of the necessary things to help his development.
But, as he became older, some of those minor morbidities started to pop up. I was at a conference one time and ended up in tears.
I had just heard a story of how many former premature infants could not stand having their toe nails clipped. Right then and there I just started bawling because William was the same way for years and I just hadn’t put it all together. It’s from all of the hundreds of heel sticks and lab draws they endure during their NICU stay.
I felt relieved to now know why it was so difficult to cut his toe nails, but it was also reassuring to know that we were not alone in this struggle.
We also finally learned after William’s third birthday that we needed to whisper or just not sing “Happy Birthday” to him. With so many large birthday parties, he just panicked when the singing started and frantically covered his ears. So once we readjusted our practice and it has gotten better with time.
We let his teachers know that he is more sensitive to loud noises. Last year they accidentally triggered the school’s fire alarm a day before the scheduled test day. He was traumatized by the fire alarm and talked about it for days and weeks.
William has grown a lot socially as well. He used to be socially awkward and shy. If someone spoke to him, he would basically turn the other way. This last summer after he turned 6, he cannot wait to chat with people and be around them.
Advice
The best advice I can give you as you navigate your baby’s journey and some of the sequelae from the NICU is to stay in your lane. Some of William’s morbidities may seem very minimal and trivial to you, but as a parent, I can admit that it’s been difficult. I wanted him to interact with other children better and be able to sing at the school’s Christmas program without covering his ears, but he just couldn’t at that time.
It can be incredibly difficult to see your child struggle in any way, so hang in there. I know some of your children have significant morbidities and that it is incredibly stressful. I recommend that you utilize the therapies offered and be the best advocate that you can be for your child.
The therapists will give you exercises or games to play with your child to help with their development and I encourage you to do them – as much as you can!
Our infants that have had a rough start are so much stronger than we even realize, but so are you! I know it can be rough and we feel so blessed to get beyond the NICU, but you and your baby still have some work to do! Stick together, utilize the services offered and provided and stay strong!
