Baby Health, Birth Stories, Info

Matters of the Heart – Heart Defects in Infancy (Part 2)

February is Congenital Heart Defect awareness month.   1 in 100 babies is born with a congenital heart defect.  In the United States, nearly 400,000 babies are born with a congenital heart defect each year. 

[Read Part 1 Here]

Providing Support to the Family

Symone was discharged from the hospital on Friday, September 16, 2005. We had come full circle, or at least we felt as though we did. This was the date we had received on Thursday, August 25th for her initial cardiology appointment. It felt as though we had lived her entire life in the span of 25 days and that we were about to begin anew. Many new parents fear taking their babies home for the first time. So here we were, veteran parents, being kicked out of the NICU with a recently “repaired” baby. New parent paranoia had nothing on us. How could they do this to us? EVERYTHING we knew about infant care did not cover any of this. Her incision was bigger than she was. She was addicted to morphine and showed no interest in breastfeeding. What were we supposed to do with and for her? The list of questions was never ending and my anxiety was even greater. Nothing could have prepared us for the year that was to come.

How can you support a relative, friend or client through bringing a baby home from the NICU?
Before being discharged find out what resources are available to the family.
The NICU provided a visiting nurse to come in a few times a week to check on Symone’s progress. The nurse reassured me. She often held my hand and pointed out that there was no right or wrong way to care for my daughter.
We were given a hospital grade breast pump. My daughter was on a diet with added calories (breastmilk with a scoop of formula).

Referrals to specialized daycares, playgroups, support groups or organizations for families who are going through or have been through similar help to create a semblance of normalcy in a very abnormal experience.

Arrange for family and friends to pick up the slack.
My (then) husband, returned to work full time the Monday after Symone came home from the hospital. My grandmother would come over to take my son to and from school. In those first few weeks, family and friends also prepared meals, did grocery shopping and laundry to give me time to rest. I was often reminded that regardless of the outcome, I had just had a baby 6, 8, 12 weeks earlier and I needed the support. My aunt would come to sit and hold my baby while I took a bath or simply took a nap.

Organize a food tree for the first couple weeks or months so the family won’t need to worry about cooking as they re-acclimate to their life post NICU.
During your next grocery run, add a little extra to your cart and drop it off at the family’s home (bottled water, milk, eggs, etc).

If you are healthy, why not to volunteer to come over to hold or sit with the baby so the primary caregiver can get a nap, a relaxing bath, spend time with the other child/ren or clean.
My daughter was ALWAYS with me. I longed for some “ME” time to feel like more than a cow, nurse, wife, mom or maid. Everyone would offer to take my then 5-year-old son but it was almost a year before I would hear “we will take the children”. There was no relief or outlet. I looked to the left and to the right and my “friends” had disappeared! And sadly, most of them did not reappear after time had passed. It was an extremely lonely time.

An understanding therapist is ALWAYS an option.
It took a few weeks and a visit to my OB for me to see that I really needed an outlet. I needed to talk to someone because I needed to process what had happened and release the guilt associated with it. I sat in many chairs and couches before finding. Each time I shared a bit of my story, I was able to release a portion of the guilt.

Some other ways to help are:


  • Prearranged visits are always wonderful. If you can’t visit, call. You don’t have to talk for long, or at all.
  • Sometimes just having a listening ear will make all the world of difference.
  • Organize a home date night for the parents to help them get back to each other. A NICU experience can drive a wedge between the most loving of couples.
  • Plan a game night for the older child/ren who may feel left out due to all of the attention the baby is receiving.
  • Provide an outlet for the primary caregiver.
  • Schedule an in-home massage for Mom.

Ideas are limitless!

My journey with my daughter is far from over. While her heart is healthy, I find myself flooded by fear. I often look at my 12-year-old daughter and see the remarkable young lady she has become. Yet, I can still hear the surgeon’s voice in my head saying “these babies die”. I shake it off… Symone is proof that these babies can LIVE!

If you know someone who has a baby in the NICU right now here are a few resources that will help make their experience a little easier.

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