Parent Perspective: Holding My HLHS Baby
This is a parent perspective on holiding a baby born with HLHS, which was shared during our most recent NPC-QIC Action Period Webinar. Thank you to Michelle and Michael Gross for sharing your story with our NPC-QIC community!
Please note: this blog contains references to a child undergoing surgical procedures.
By Michelle & Michael Gross
In February 2021, we were broadsided with our daughter’s diagnosis, at the 20 week ultrasound, of HLHS. We felt our world was crumbling, and that the foundation on which we stood was shaken apart. Little did we know, this would not be the last time we would feel these same feelings of the unknown.
Isabella was born in late June 2021, and underwent the Norwood operation at four days old. We held Isabella as much as we could before she went under the knife. We felt it was crucial that we hold her as much as possible because we were unsure if we would hold her again.
After surgery, we couldn’t hold her for a couple of weeks. After those two weeks went by, it was obviously much more difficult to hold her with all of the chest tubes, IV lines, and because she was intubated. We held her as much as possible. Our team at Primary Children’s Hospital was amazing in teaching us how to best hold her. We felt it was so important for her early days of development. Especially with all the difficulties ahead of her, the more she was held and loved, we felt that the outcome would be better and we could also find hope. It also gave us strength to keep going.
“We believe holding your baby, especially when they are sick like this, can give them a better shot to succeed and to heal. Having that physical touch has made our bond stronger and has made this wait and this journey a lot easier for us.”
In February of 2022, Isabella’s health declined within eight hours, and she needed an immediate VAD placement. This was very scary for us as we were directed to prepare for the worst. We held her that day more then ever—I think for our own comfort. But, despite all of the odds, Isabella received the surgery very well. She has had the VAD since then, and we are currently waiting for our life-saving gift of a Heart Transplant.
Holding her has been more difficult with the VAD, as it hangs outside of the body. At first it was nerve wracking because it has her blood in it, it has its own heart beat, and it’s pretty much keeping her alive. We feared if we bumped it the wrong way, it would fall off! Obviously we have learned it is very secure, and have become very comfortable with it. The VAD has been amazing for her, and she is thriving. I have also been able to use my “creativity” and adapt some of Isabella’s toys so she can be able to use them and live a “normal” and fun life while she waits for a perfect heart.
To conclude, we believe holding your baby, especially when they are sick like this, can give them a better shot to succeed and to heal. Having that physical touch has made our bond stronger and has made this wait and this journey a lot easier for us. We wouldn’t be able to do it without our awesome team of nurses, doctors, therapists and more from Primary Children’s Hospital, and for that we will be forever grateful to them.
