Meet Jennifer Conn, one of our HIE Awareness Ambassadors from York, Pennsylvania.
What is your story and connection with HIE?
I am the mother of a 3.5 year old girl with HIE. I had a very healthy pregnancy. Everything was perfect until the night of my due date when Evelyn went from head down to breech. From that day, until the day I went into labor, I did everything I could to encourage her to flip, but she just would not flip. I went into labor at 41 weeks, three days. I planned on having a home birth with my midwife’s approval knowing that Evelyn was breech. When my water broke, it was meconium stained. I was assured that that was ok. It happens after 40 weeks. That whole day, I barely had any contractions, I remember joking about how boring my labor was.
It was going on almost 12 hours with not much progression when my midwife urged me to try doing different methods to kick start active labor. I tried pumping, I bounced on a ball, I walked a few times around the block, I even took castor oil. Shortly after doing all of this, contractions started. I decided to try and get a shower. The moment the hot water hit my back, I knew that I needed to push. My midwife and friend helped me get from the bathroom to my bedroom and that is where I had Evelyn. I remember that my midwife would tell me to try and push on the next contraction and I just kept thinking how it seemed like the contractions were stopping and I didn’t know if I was to push or not. I didn’t know at the time, but Evelyn’s cord prolapsed which my midwife noticed and she was really wanting me to get her out without scaring me.
When Evelyn came out, she wasn’t moving. She had aspirated on her meconium before coming out. I was encouraged to hold her, rub her, but nothing I did helped. My midwife and doula stepped in and said that they needed to help her. They tried suctioning her…Nothing. At this point, everything went downhill as the next thing I heard was “Call 911” and they started doing CPR on her. The ambulance came and rushed her to the hospital where she was admitted into the NICU. Before I even arrived at the hospital they had done bloodwork and found that she had suffered a hypoxic event, so they started her on the cooling mat.
That is the day everything in my life changed.
I got to the hospital (I was taken via ambulance also), and I didn’t know if my baby was alive or not. I wasn’t able to see her for several hours. I knew that she was in critical condition. They told me that everything was trending downward. All we could really do is “wait and see”.
The first three days, nobody could tell me if she was going to be ok. Was I going to have a baby to take home with me? How would I ever survive if she didn’t? There wasn’t much I could do, but wait and pray. Evelyn made it through the cooling process and then came the rewarming.
I couldn’t hold her, I could feed her, I couldn’t change her. I felt so useless.
I was pumping for her. It was all I could do, but at that point she wasn’t able to even take any of my milk. I remember the day that I went in for rounds and I just asked, “Am I going to have a baby to take home with me?” The neonatologist looked at me and said “Yes. Everything was trending downwards for a while and it didn’t look good, but all I can say is she is a miracle baby.”
Evelyn needed to learn how to eat. She was born without a gag reflex. It took awhile for her to gain it back. Her lungs needed time to heal. She had PPHN and her one lung was completely filled. She would tire out so quickly. She required extra help with breathing.
The NICU journey is one filled with ups and downs, one step forward, two steps back. Evelyn’s biggest struggles in the NICU were with her lungs and feeding. She came close to getting a feeding tube, but a few days before we got discharged she started taking in more.
Evelyn had feeding issues since birth. She was so close to getting a g-tube while in the NICU. I wanted that for her, as I saw how inconsistent she was and how much she struggled, but I didn’t speak up. She was sent home without. She has struggled with feeding ever since. Oral dysphagia, nights of screaming, coughing and choking on everything….My advice for others comes from my one regret…If you feel that something is wrong, that your child needs something…Speak up. Don’t allow anyone to make you feel wrong for advocating for your child.
Evelyn was in the NICU for 33 days. It was the hardest thing I had to go through. I have an older child (she was 10 at the time) that I had never been away from until then. I had to figure out how to be a mom of two children that were in two different places.
Since leaving the NICU, Evelyn has had several inpatient stays in the pediatric unit at the hospital. Most have been due to feeding issues. She also gets sick more frequently than her peers and when she gets sick, she has a harder time getting back to health. Evelyn has received therapy since leaving the NICU. She was in Early Intervention for until she aged out at age three. She received PT, OT, speech, feeding, and special instruction. Once she aged out, I then had her enrolled into preschool and she goes to an AMAZING therapeutic preschool program.
My life has changed so much since I had Evelyn. HIE is a “wait and see” diagnosis. The day we were discharged from the NICU they couldn’t tell us how she would be doing at age three. They have her being followed by several specialists for that reason. At age 3, I would say that Evelyn falls somewhere in the middle. She’s not severely affected, but I also wouldn’t say that she’s mildly affected.
The hardest part about having a child that falls in the middle is the lack of support and services. They will see your child progressing or doing certain activities that appear “normal”, but if you only spent time with them you would realize this child is struggling. Evelyn has struggled with feeding issues since birth. She has been hospitalized due to her feeding issues. She has been in therapy due to her feeding issues, yet I have struggled to get anyone to understand how greatly her struggles affect her daily. They see a child that is growing and smiling and are quick to “write them off”. I feel as a mother of a child that falls in the middle, I have to fight harder for her to get the help and services she needs, to be heard, to be taken seriously.
My daughter hasn’t been diagnosed yet, but I am working on advocating for her to get a diagnosis of Cerebral Palsy (we believe she has a mild form). A few therapists have noticed the weakness on her right side, the tensing/fisting of her hands, but if you go to the neurologist and they don’t see it within that 15 minute once a year appt, they don’t seem to listen.
I want them to listen, I need them to listen.
To finally receive the diagnosis would allow her to get more services which would help her so much. No matter what happens along this journey, no matter where it leads, I will do whatever I can to ensure that my daughter gets the help that she needs and deserves. I have so many regrets from not advocating for her harder when she was in the NICU that I promised myself and her that no matter what, I will always fight for her.
As well as she is doing, I always have those “what if” moments, but then I remember “have hope”. One moment at a time, We will get through this. It is hard, so very hard raising a child with HIE. You don’t always know how things are going to turn out, but one thing that I have learned through all of this is that there is a community of people that are willing to be there for you, to help guide you, to comfort you, to give you hope!
How did you first hear about the diagnosis of HIE?
After I had Evelyn, that night I decided to post an update on Facebook. I wanted to let everyone know that I had my baby, but that something went wrong during delivery and that she was in critical condition. I went on to explain that I didn’t know what fully happened, but it would be a few days before I knew if/where her body was affected. I asked for prayers and posted a picture of her. A Facebook friend messaged me and said, “Hey, I showed the picture of your baby to a friend. That happened to her daughter. It is called Hypoxic-ischemic encephalopathy (HIE).” When she saw my daughter’s picture on the cooling mat she knew. The next day I went down to the NICU and asked “Does Evelyn have HIE?” They responded Yes. I don’t know if they ever would have told me what she had if I didn’t ask. I am very grateful for my friend messaging me that night.
How did you first hear about Hope for HIE?
After I was told that my daughter had HIE, I went online and searched ANYTHING and EVERYTHING I could. Through one of my searches, a link for the Hope for HIE Facebook page came up. I probably spent hours that night just scrolling through posts. Hope for HIE’s Facebook page is what helped me survive those first few nights.
What do you want the world to know most about your story and HIE?
Never, ever give up hope. If you find yourself without support, reach out to those in the Hope for HIE community. The people that you meet along the way, they are going to become like family to you. HIE is a wait and see diagnosis, that yes can be very scary, but you don’t have to go through it alone.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
Connect with families, read inspiring stories, and get helpful resources delivered right to your inbox.
