Part Two: Living with a Prenatal Diagnosis of HPE

Yesterday, we brought you ‘Part One’ of Living with a Prenatal Diagnosis of HPE. This entry is the beginning of a series called, Perspectives. Donna, a mother living with a prenatal diagnosis of HPE, shared the first part of her story of what life has been like, since the diagnosis. She told about receiving the news and the grim picture painted of her daughter, by medical professionals. In ‘Part Two,’ Donna describes what it was like to share the news with family and friends, facing the unknown, and the conclusion of her story…for now.

Sharing the news
After doing a considerable amount of online research to better acquaint ourselves with HPE, and meeting with our Pediatric Neurologist, we decided it was time to share this news with our loved ones.  After telling our parents, we decided to send an email briefly describing what we’d learned, explaining there is a wide spectrum of possible outcomes and we really didn’t know what our Abby’s prognosis would be until we met her, but we’re just hoping we can be the parents she deserves.  It was important to Matt and I that we shared the news in this way, because there was no way we could handle repeating the story over and over, answering people’s questions, and dealing with their sadness for us.  Additionally, I was worried that Connor would pick up on the conversation, and this is certainly not something for him to wrap his precious little 4-year-old head around.  We are blessed with a wonderful support system of family and friends, and they understood our reasons for the rather impersonal method of communication.

Overall, the reaction we got from family and friends was very supportive.  Though, it’s my opinion that people definitely should think a bit more carefully before they speak.  I appreciate that people think I’m a strong person.  Thank you for the compliment, if that is all that was meant by it.  But, I’ve had people from the esthetician at my salon to close friends follow that compliment with telling me how they “couldn’t do it”, or “just don’t know if they could be that strong.” OK, just stop.  When people say that, I feel like 1. They are conveying pity, which I don’t want, and 2. They are saying that personally, they don’t think my daughter’s life is valuable enough to give her a chance, but good for me for going above and beyond.  I find it infuriating.  I’m not stronger than anyone else is; THIS IS MY CHILD! I want her, we made the effort to become pregnant with her, and I’ll do everything I can for her, whether she is the child I was expecting to have or not.  It’s called being a parent, giving unconditional love, advocating for your child. I had no idea I would have to start advocating for her so fervently before she was even born. I suppose it’s just preparation for what’s to come, once she’s born.

The day to day of dealing with the unknown
Since my ultrasound on June 17th, I have cried everyday.  Sometimes it’s just my eyes filling up for a minute in the car as I’m alone with my thoughts, or at the playground watching little girls run around.  Other times, it’s real sobbing as I try to go to sleep at night.  But nonetheless, it’s been 114 days straight that I’ve cried in some way.  My tears are not because I’m sad about having a child with special needs; though certainly, if I could choose, I would have my child be healthy and not be challenged in this way.  I am sad knowing that we won’t be able to do many of the things I’ve dreamt of doing with my daughter, and that we won’t enjoy the same type of relationship I have with my mother.  But, knowing that our life will be different or harder doesn’t make me feel bad for myself.  I cry, because I’m just scared.  I don’t know what to expect, and I’m scared of the unknown.  I’m scared that Abby may never make it home to see her nursery.  It was actually only a few weeks ago that I allowed myself to start buying things for her.  I’m scared that I’ll have to break Connor’s heart and explain why his sister died, or at the very least why she requires so much extra care and that I’m sorry, but I just can’t play with you right now, or I can’t go to your game.  He’s so innocent and so excited to be Abby’s big brother; he’s loved her as if she were his own from the minute he figured out I was pregnant!

At the same time I worry she may die, I’m also scared that Abby will live for a long time, and I won’t be a good enough mother to both of my children, because she will require so much more attention.  I’m scared of what other kids might say to Connor about his sister being ‘different.’  Will I know how to handle those situations? I’m scared that I won’t be able to work, and I have to work to support our family.  I’m scared of how this will affect my relationship with Matt, and what his relationship with Abby will be like- it’s hard enough for men to bond with a new baby; it’s not like he had the last 8 months that I’ve had with her.  How will he deal with the stress and with the new responsibilities that will be required of him?  I am a planner for a living, and at this most critical moment in my life I HAVE NO PLAN.
Standing in my circle
My friend posted to Facebook the other day, “God long ago drew a circle in the sand exactly around the spot where you are standing right now. You were never not coming here. This was never not going to happen.”  So, I guess I’m exactly where I’m meant to be at this point in my life.  Though I feel ill-equipped for this difficult and uncertain journey ahead, Abby was always going to be our baby girl, Connor was always going to be her big brother, and if we can surrender ourselves to the unknown, perhaps we’ll find peace and the grace to deal with whatever we’re presented with.  I guess there is somewhat of a plan.  My new motto is “I really don’t know.  I’ll just figure it out when it happens,” because so many of the questions we have right now, just don’t have answers yet. That is an expression I would have scorned in my pre-Abby existence, however if I’m ever going to be at peace with myself, I have to just learn to go with the flow.  And I’m very HoPEful that I will be able to figure things out.  In just 5 weeks from today, we’ll start figuring everything out.

Thank you, Donna, for sharing your perspective with us, and thanks to our followers  for reading the first entry of our series, Perspectives. We HoPE you were able to gain further insight into living with a prenatal diagnosis of HPE. We are accepting more submissions, so please email us if you are interested in submitting your story! Again, we are seeking perspectives of the various phases of the HPE journey, including prenatally living with HPE, having an infant/toddler with HPE, having an elementary-aged child with HPE, having a teenager with HPE, having an adult with HPE, and having an angel with HPE.

2 Comments on “Part Two: Living with a Prenatal Diagnosis of HPE”

  1. My daughter who is 19 was told a week ago that her babies brain was not developing right. I asked for copy of u/s and we went home. U/s reads as follows Severe intracranial structure abnormality seen with dilated bilateral frontal horns, absence of corpus callosum and probably fusion of thalamus. Possibility of holoprosencephaly suspected. Cerebellum and cisterna magna are seen. Wow within an hour I was on the phone to the carter center and in 2 days Debbie had sent the info pack. I had finally accepted her being preg. at 19 then wham she is now 24 weeks. I was at a wake the other day for a friend who lost her mother and another coworker said there is nothing worse than losing a parent and I’m sorry to say I cried inside and thought how bout losing a baby at 19 🙁 Its amazing how your life changes in a heart beat. I like Donna cry everyday. Moms are healers and I wish I could take her pain away but I cant. She doesn’t want any info before lev II and i’m scared for that Take care and God bless!!!!

  2. Pingback: Perspectives, Part Two « Carly and Jay, Plus 2