Monday, March 19, 2012

Dealing with the invisible disabilities of preemie babies

This guest post is from Nick Hall, an amazing father who's behind Parents of Preemies Day; the first one is happening this Friday, March 23, a day of recognition for the parents of premature babies. Every year about 13 million babies around the world are born prematurely—that's 10 percent of all births. Nick and his wife, Jennifer, founded Graham's Foundation in 2009 in memory of their son. The foundation sends care packages to parents during their stay in the NICU; its website provides a place to share stories and find support.

My daughter, Reece, and my son, Graham, were delivered on Thanksgiving Day 2006 by emergency C-section. They were 25 weeks and three days gestational age—only a little more than halfway through a normal pregnancy. My wife was extremely sick. I was scared for her and scared for our babies. They were essentially still fetuses, not yet ready for the world outside the womb. Graham was with us for only 45 days. Reece held on, overcoming more than my wife and I would ever have imagined possible.

 Jenn and Reece, 2 months old

As my wife and I coped with Reece's four months in the hospital and the realities of prematurity—going on and off a ventilator, brain bleeds, infections, surgeries—our friends, relatives and coworkers realized sensitivity and understanding were called for. One wonderful friend brought us home-cooked meals every week. Another walked our dog on a regular basis. Once we made the transition home, however, we discovered that the same level of sensitivity wasn't always easy to come by. 

We knew that keeping Reece away from the outside world was in her best interests, so common illnesses like colds wouldn't interfere with her ability to grow and get stronger, but it was difficult. As much as you'd like to believe that people will understand completely, they didn’t. People literally told us that Reece needed to be "exposed" to germs to strengthen her immune system without understanding how much that might set her back (or worse).  

While my wife and I are blessed that our marriage stayed strong, it wasn't easy and other relationships were tested. Under normal circumstances, we would have focused an immense amount of time on our children, but Reece's unique birth and health circumstances meant we were focusing almost entirely on her needs. People in our lives didn't always understand that sometimes what we needed was space. Not everyone was sympathetic or even considerate when we kept our distance.

Reece developed hydrocephalus as a result of her brain bleeds and today, at age 5, she needs a shunt to help fluid in her brain drain properly. You can't see it but you can feel it. One side effect is that she gets migraine headaches and doesn't have the ability to go-go-go like her peers, even though she wants to. We have to make sure she has body/mind breaks throughout the day or we know that she will end up getting a migraine at the end of the day. Sometimes that means missing out on fun. In the beginning, there were friends of ours who didn't get why we were holding her back. In some cases, it took a lot of explaining.  It often looks like we are overbearing, when in fact, we would like nothing more than to let her go-go-go.

Reece is tall for her age, so she fits in with other kids in her class, though developmentally she needs extra time to catch up to them. Because of that, we're delaying kindergarten. My wife has had to deal with judgments from others who only see a tall, seemingly healthy girl—not a preemie.

Many of the lasting effects of prematurity, like so many other challenges children with special needs and their parents face, are often invisible. Of course, sometimes the effects of prematurity on families are obvious: A toddler in leg braces. A father who can change a feeding tube with his eyes closed. Thick glasses on a three-year-old. A mother who gave up a career because her daughter needed a level of care that daycare couldn't provide. More often, however, the lasting impact of prematurity on children and families simply isn't obvious at a glance—sensory issues, behavioral issues, autism spectrum disorders, and weight and growth issues. How often do people interpret common effects of prematurity as somehow being the fault of parents?

There are those who might consider the invisibility of many of the effects of prematurity a blessing, children who look in every way average have one less burden to bear. But parents of preemies know that the invisible special needs can become the root of misunderstandings that can strain and even irrevocably damage relationships.

After my family's experience with prematurity, I vowed to do what I could to help other parents of preemies survive all aspects of prematurity, including the isolation and misunderstandings. Part of showing the world that prematurity doesn't end when a family leaves the NICU and that the effects of prematurity can't always be seen is showing the world the real faces of prematurity. That's what Parents of Preemies Day is all about. We're asking parents of preemies to share their stories on our Facebook page to become a part of our Parents of Preemies Day banner that will be unveiled on Parents of Preemies Day, showcasing all of the pictures of parents and their preemies and their messages of hope, resilience, and miracles.

Sometimes, combating the misunderstandings that result when a health issue can't be seen is as easy as sharing the reality with the people around you. If you know the parent of a preemie or someone who knows a family coping with prematurity, please share Parents of Preemies Day with them. With your help, we can open people's eyes to the invisible effects of prematurity.


  1. I couldn't love this post more. I am so sorry for the loss of Graham. We had triplets at 28 weeks and our daughter did not survive coming home from the NICU either. My surviving triplets are now 4 and we deal with so much of the same, especially with our daughter. She too had a brain bleed and has so many unexplained issues going on right now that it is difficult to even keep her in school. This post brings back so many memories of what we went through. I look forward to joining you on Parents of Preemies and so glad to meet you.

  2. Although my son wasn't a preemie, we have dealt with many of the same issues. The immune thing drives me crazy!! Eight years later, we are still trying to explain that he has a GENETIC immune disorder. Exposing him to germs will no more fix his immune system than hanging out with a friend will make your hair or eye color change.

    Anyway, excellent post and continued success with your daughter.


  3. Thanks for sharing that. I think all parents of kids with disabilities -- visible or invisible -- experience those feeling of others not 'getting' them and their unique challenges, and not rising to the occasion in the way we would hope. What a great idea to have the Parents of Preemies day! Louise

  4. Thank you for this post. I also have a surviving twin who was a preemie. She is three and we continue to deal with the repercussions of her early birth. I have written on my blog about my mixed feelings of her invisible disabilities, other than her tiny size. She is the size of an 18-month-old.

    I love the work of the Graham Foundation. Thanks for featuring it here.

  5. Wow, what a great organisation - kudos to them!

    Even though we did that preemie stuff with Mac as a 26wkr it has absolutely no focus in our lives, I guess on reflection that was our safe haven and a time we NOW remember almost fondly.

    The thing is it was completely overtaken by Mac getting sick with that 'dreaded flu' four months after leaving the NICU - despite being careful with contact. And, sadly... courtesy of some pretty poor medical support Mac sustained a massive brain injury due to lack of oxygen on day 9 in hospital.
    So our kid that had got through beingt a 1 pound poppet leaving the NICU unscathed was now slammed into the severest end of disability.

    The big difference is Mac's disability is far from invisible, and I maintain it is much easier having an obvious disability and I think easier to have a severe disability compared to a mild disability when it comes to the judgement of others.

    Keep up the good work, what a great legacy in honor of your little boy Graham.

  6. This is such a great post. I just ran the L.A marathon yesterday for March of Dimes. My best friend lost his son due to complications from prematurity. He lived for five months and far exceeded all odds.

    I really like how you pointed out that we can't always "see" prematurity. Furthermore, I really wish we could be less judgmental towards parents. We really have no idea what is going on with the child, the parents, or the history.

    I've said it many times in the three years since my son has been born and I am sure I will say it many times more. I think he teaches me far more about life than I could ever teach him.

    "The child psychologist who thought she had all the answers to parenting until she became one herself."

  7. What a great post. It's nice to hear stories of people who have gone through what we're going through. So many of our friends and family don't really understand. People don't get why it takes so long for me to "pack up" the kids when it requires oxygen, special formula, a monitor, medicine, and so much more even if it's just leaving the house for a few hours. Our twins were born at 27 weeks and we're so very very blessed that they both were such strong fighters. They're 9 months old now, we still have a lot of struggles, we get a lot of judgmental comments on their size, we still have way more doctors appointments then I'd like, but they're getting bigger and stronger every day and they're such beautiful little miracles :)

  8. I love your post and it really helps to know I am not alone. My daughter is a survivng twin. she was born at 29 weeks and has a weak immunity and is delayed in some areas everyday is a blessing.

  9. Loved your post, Nick. "The lasting impact of prematurity". Indeed! I can relate to sensory, behavior, autism, etc... I would add attention problems, slow processing, and fatigue. My son did not leave the house for a year after the NICU except for doctor appointments. There were lots of comments about that. His fatigue continues to be an issue (he is now 10). My efforts to help him conserve his limited energy are often questioned. Agreed that the feeding tube and braces were easier to deal with than behaviors are now.

    I'm sure you know, Nick, that you and your wife will need to be strong advocates in the school system for years to come. Good luck and thank you for raising awareness of the hidden issues.

  10. Reece is a blessing to you and she is also blessed to have a parent like you, who never give up on her. Thank you for sharing. It was really nice of you sharing your story to help other people.

  11. Nick,

    #1 - You ROCK for Parents of Preemies Day!

    #2 - Your post is beautiful. Nicely put!

  12. 11/29/08, our twins were born at 27 1/2 wks, one home 02/09, the other with many of the same medical conditions you have described but more, home 05/09. If I would have listened to the docs & nurses however, he would not have lived as long as he did.

    On 03/22/12, our home bound Chase died under the care of Loyola. He went in via ambulance 03/04/12, come to find out he had RSV Pneumonia (caught from his more able bodied brother in preschool)and was not intubated until approx. 9 hrs later due to no blood gas being done in ER. He was on an Oscillator I was holding with good ph, o2 sats, blood gas, etc., until they introduced a hospital born gram negative infection via one of his IV lines and was then given a .5 to 1% chance of living. This gram negative infection was present at Loyola when they were born & apparently still there over 3 yrs later.

    Point is, the protocol is not being followed enough to curtail these infections, especially in those at greater risk. Understanding that avoidance to virus & germs until age 5 or longer, IS THE WAY TO GO, I KNOW FIRST HAND!!!

    I do not want Chase's death to be in vain, as we need more protocol and understanding with preemies, especially those with multiple factors.

    Chase had a grade III brain bleed, hypotonic, BPD, a finger contracture, lymph edema of one hand, various vascular markings over his body, ROP left eye, & others. In/around 06/11, we found he had prader willi syndrome, and in 12/11 through 01/12, found he had a renal cyst, scoliosis, cervical spinal stenosis without compression & his permanent teeth were in his maxillary sinus cavities.

    I wanted to care for him no matter what, keep him away from what I could & against my better judgement, sent his twin to preschool and asked for Special Ed to keep me informed of ANY ILLNESS. This was not done.

    Thus, what ultimately caused his death, infection.

    To all out there with compromised children, no matter what, keep them away from illness. No one knows this better!

    Good Luck to all of you and I am sorry for your losses.

    I am still on a roller coaster everyday, wanting more time with my Chase, to love him more, to care for him more, but I know I can only hope he is now not bound by any earthly body and he is now able to run, sit, stand, eat, laugh.....

  13. My friend's mom had a preemie baby. His name is Ian. He got bad allergies and had to be given Benadryl. Now, he is healthy, charismatic, and can hold a ball for 10 seconds.

  14. I know this post was written al long time ago, but I wanted to comment anyways... I had my twins at 28 weeks due to complications of TTTS. Our sweet Anne only survived a few hours, but our little Jillian was able to work through her issues and is now 3 and doing great. She is little had has some delays, but considering what she has had to over come... shes doing fantastic! My problems lately have been with friends and family treating me like I'm overreacting about her sensory issues or her chronic lung disease. I have Drs and therapists (OT, PT, and speech) helping and being very understanding! I don't have to convince them of anything! It's friends and family. "She'll grow out of the baby talking. Leave her alone." Friends also told me to "give her time" when she wasn't walking around 18 months. I actually waited too long to get her help. And by the way my preemie is my 5th child. It's not my first time around the block. Our girl is tiny, but other then that (and her LARGE head) ;) she looks great. She is great, but she does have issues and I hate when people discount her issues. Statements like, "My kid did that too and they weren't premature! She's fine!" I get that a lot! "My friends son wasn't a preemie and they have the same breathing issues and they grew out of it." I usually come back with, "Well... your/their kid wan't born at 28 weeks and on a vent for a week nor did they spend months in the NCIU." I'm fine in the Drs office or when talking to her therapists, but as soon as I start to explain anything to my friends... one look or a brush off and i'm back to, really having my feelings hurt. UGGH! sorry for the rant. Your post really made me feel less alone. Thank you.


Thanks for sharing!