Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 I wanted to share some of the things we have been through concerning our beautifully amazing daughter Hannah. My daughter came 4 weeks early....and unfortunately we (Hannah and I) both had to be airlifted to a neonatal intensive care unit (NICU) because her lungs were not fully developed yet. She was hooked up to a respirator for 3 days and discharged after 9 days. While at the NICU, I asked if we could get an opthamologist to look at her eyes. We noticed that she was unable to open her eyes and were very concerned about it. The doctors and nurses were not able to diagnose her with BPES...because they had no experience with it....so their response was basically her eyes are that way because she was premature. When the opthamologist arrived...Hannah was only 4 days old. I was still recovering from all of the excitement of giving labor...getting on a propeller plane and flying 2 1/2 hours directly after giving birth...watching my daughter while being hooked upto all sorts of wires and tubes...pumping breast milk every 2 hours so that she would have it when she was unhooked from the tubes...all of this being several hours from home and even farther from our families...exciting times..let me tell you... Anyhow...this opthamologist...an educated woman from a big city...took one look at our daughter and asked me if I drank or did drugs while I was pregnant...I was shocked and offended. I told her no and then shared with her that I taught parenting, child development and life skills to pregnant and parenting students and was fully aware of fetal alcohol syndrome (FAS) and fetal alcohol effect (FAE). After tormenting my daughter with some metal clasps on her eyes and causing her to bleed, the opthamologist told me that my daughter would probably be blind (she didn't even bother using a more accepted term like seeing impaired). She also said that she would love to see my daughter again in a couple of weeks...at which point I said no thank you and shared that I thought she was unprofessional and disrespectful. I received an apology from her and the NICU doctor but it didn't change the facts. However...I was able to learn a great deal from that experience. There are still people who assume that Hannah has Downs Syndrome...and I know it is because they have no idea what BPES is and Downs is probably their only point of reference. In actuality...she looks nothing like a child with Downs or FAS. It still hurts when somebody makes a comment or assumption and thankfully Hannah is still unaware of those kinds of things. Unfortunately, there are alot of mean people in the world and there are also alot of people who just do not know any better. I do not mind sharing the details with friends and family members...because maybe they'll tell someone and they'll tell someone and pretty soon there will be more people educated about BPES than not (not such an unrealistic goal). I also used to question myself...did I do something during my pregnancy to make this happen...or did I party too much in my early 20's during college...did that diet Dr. Pepper that I drank during week 20 do something...was the fish cooked enough that I ate at Christmas time. You can really tear yourself up. The way some people responded to Hannah use to make me doubt myself even more. But not anymore...because I know there is nothing I did to make this happen. Most importantly, my main focus is my daughter and our jobs as parents to Hannah is to lift her up...support and nuture her...so that she will be strong and confident enough to handle any bully or ugly person that may cross her path. My husband and I were teaching on the Navajo reservation when our daughter was born...and I actually had a student tell me that Hannah was born that way because somebody gave me a gift for her before she was born. The Navajo people traditionally do not have a baby shower before the baby is born....which makes perfect sense to me...however...I do not believe that because we received a gift before she was born caused her to have BPES. It is more of a superstition than anything. I am sorry that there are people who are suppose to love your child unconditionally who are not very nice. I say you are better off without them in your life. I personally want to be around people who accept me and in this case, my daughter, just the way we are. There is enough negative and ugly things in the world that are completely out of our control. The people we choose to spend time with IS in our control...and I choose to be around loving, positive and supportive people. And if that means cutting out a family member or two then by all means...bye bye now...have a good life... Thanks for letting me share and thanks for sharing as well. Debbie tonikka <lyndenhunter@...> wrote: hi Leah im just the person to ask about people not accepting my son for who he is. my sons grandmother (his dads mom) only just recently acknowledged that he was her grandchild, from the time he was born she blamed me for his "looks" says I must have drank or did drugs, funny thing is I never ever have touched the stuff. anyway from when Lynden was 5 months old till he was 2 she refused to see him, she said she could not handle having a "retarded" looking grandson (look at his pics, he looks far from retarded) anyway we decided that we would slowly reintroduce her back into my sons life, by this time we had a daughter too, well she ogled and oogled over hunter (my daughter) I told his dad he would have to start standing up for his son and for me ( she said many many nasty things) he refused said he could not turn his back on his "family" (obviously not me and his kids) so I gave him the ultimatum and he chose his "family" unfortunately it took our divorce for her to really get to know my son but you know what I am glad it all worked out this way because both his dad and I are in new relationships " im getting married in august"(never thought I would do that again) and he sees his dad every single weekend. so in the end it worked out, but I tell yah I am sure glad to know that my ex mother in law is not the only ignorant woman out there. hopefully your sons grandmother will realize what she is missing out on. my only suggestion to you would be tell her where to go ( if you can ) but really try not to let it get to you, I know that is probably the last thing you can do, but honestly it does get better, EVENTUALLY. Tonikka -----Original Message-----From: leah [mailto:leahs_male@...]Sent: May 6, 2004 10:11 PMblepharophimosis Subject: Re: blepharophimosis Ethans photos Ethans eye specialist here in Hastings, NZ is Dr Jane Houliston, She is brilliant. She put synthetic suspensions from his eyelid to just above the eyebrow.. At first the eyes were so open it was pretty scary but a few weeks after the surgery, the swelling and bruising had gone and they looked 'normal' if that is the right word. He also had to have drops in his eyes every day because he couldnt blink theye eys were not getting any moisture and they were drying out.. it was also coming into summer so the sun was probably affecting them too. She recommended some sunglasses but Ethan wouldnt weat them.. despite bribary and growls etc.. so we gave up and just used the drops. He has vision tests every 3 months and so far is doing well and has no need for glasses. Yippee! He has low muscle tone which affects his balance and fine motor skills, he also cant be toilet trained because of this. He also has very bad hand eye co-ordination and tends to relate to adults better than kids. Ethans father does not support me in any way with his condition and we split up two years ago which makes it hard battling along on my own. His mother is also very unsupportive to the point of being nasty about Ethan and even excluding him from things she does with the rest of our family. I am slowing learning to put my foot down with them but its like battling a lost cause .. does anybody else have jugmental people like this that they have to put up with because they are family? I have tried explaining about the syndrome so she will understand but it seems to fall on deaf ears. Its just plain that she doesnt like him.any suggestions would be really welcome. RE: blepharophimosis Ethans photos my goodness Leah your son Ethan has the biggest, most wonderful blue eyes, (I think they are blue) the doctors have done wonders, what is it they did exactly?? Tonikka -----Original Message-----From: sxyme32002 [mailto:leahs_male@...]Sent: May 6, 2004 1:10 AMblepharophimosis Subject: blepharophimosis Ethans photosHi there to you all.. I have posted Ethans photos in the album.. Thank you all for your replies.. Take Care.. From Ethans Mum... Leah Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.