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My Baby with Complex Medical Needs: A Mom’s Story

Amy Long Carrera, MS, RD, CNSC, CWCMS
Registered Dietitian Nutritionist | Shield HealthCare
12/08/16  9:23 AM PST
complex medical needs

If your baby is born with complex medical needs, you’re not alone. There are other parents going through something similar. One mother tells her story.

 

My Baby with Complex Medical Needs

Story by Melanie McGourty, mother of Scarlette

 

I found out early in my pregnancy that Scarlette had complex medical needs, specifically, duodenal atresia – also known as double bubble – or a blockage of the bowels. I was told Scarlette would need to be incubated immediately after the C-section and transported to our local Children’s Hospital for surgery. I was devastated, as I was only able to snuggle her for about 20 minutes before they took her.

 

complex medical needs

I would be stuck recovering at the hospital and not able to be there for her for 4 entire days. Her condition had made for a very difficult pregnancy. The amniocentesis came back just fine but they noticed a problem on the sonogram. From what I was told, the normal amount of fluid in the amniotic sac is roughly 5-25 centimeters (cm), with 25 cm being on the high side. Well at one point, mine was in the 60’s! No one in that office had ever seen anyone with numbers like mine (I think I deserve to be in the Guinness Book of World Records)!

Needless to say I was huge, uncomfortable, scared, many things. They monitored me weekly, sometimes numerous times a week. I also had a few scares of her coming VERY early – because of the situation, my body was telling us it was time.

At one point, I was transported to the local ER from my sonogram appointment. The doctor hooked me up to a bunch of machines to monitor myself and the baby, took the same needle that’s used for the amniotic test and a sonogram to watch her movement, and began suctioning out the fluid through the needle to hopefully relieve some of the pressure. It was a lengthy procedure that they don’t do often and it was unbelievably scary. I had to lay super still, not to mention the risk of infection, poking Scarlette with the needle, etc. They removed 2 1/2 liters of fluid and even after that I was still at 43 cm.

complex medical needs

She kept trying to come early and I was put on medicine to hopefully delay the process, but she ended up coming a month early anyway. She had surgery to repair her bowels on day 2 of life– we were in the NICU for a little over a month that time. During that time we found out she had numerous problems with her heart and lungs and the veins surrounding these vital organs and would require monthly injections, CAT scans, echocardiograms, cardiac catheterizations, MRI’s, etc. Since then, she’s had two open heart surgeries, both within 6 months of each other.

complex medical needs

We are home recovering now, and only time will tell what’s next for us. As I’m writing this, Scarlette is booked next month for another round of tests and procedures in preparation for possible open heart surgery yet again.

 

Advice for Families Dealing with Complex Medical Needs

For families dealing with complex medical needs, my advice to you is this: ask questions – whatever you can think of so that you’re prepared for anything; take care of yourself so you can take care of your child; and talk to family, friends, even therapists. A support system is crucial to getting through this experience.

complex medical needs

 

For more on caring for a baby or child with complex medical needs:

10 Things to Bring on a Hospital Admission with Your Special Needs Child

While Your Baby is in the NICU: Top 5 Helpful Tips

Comments

2 Comments

  1. Judy
    Posted December 9, 2016 at 8:57 am PDT

    A very well-done article on families who have children with special needs. How wonderful that there are people like this mom …Melanie whose daughter Scarlette was born with many special medical needs.

  2. Posted December 12, 2016 at 8:21 am PDT

    Thank you for your positive comment, Judy!

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