Surprise

My son Damian was born July 3rd, 2011. Throughout my entire pregnancy I was examined carefully because I have a cardiac pacemaker which I received about 3 months before his conception. I had a lot of ultrasounds and all the tech's and doctors showed a normal healthy pregnancy. My water broke at 3:30am July 2 and daddy and I took off to the hospital anxious, tired, and scared, excited...every emotion. 23 hours later on July 3rd Damian was born only 2 weeks early and a surprising 5lbs 3 ounces. The doctor asked "why is he so small?" I had gained over 50 lbs so we were all shocked. Then they saw his leg. "What is this?" everyone asked. No one knew what to make of his leg. He was taken to the NICU where he would receive antibiotics and formula for 7 days because we had both eneded up with infections during labor. My OBgyn didn't deliver my child but he came in the a few hours later and apologized for not catching PFFD on any of the ultrasounds. He said when they measure they only measure one limb. I didn't mind then, I just wanted my baby home with me. He is 4 and 1/2 months now and I am terrified. I just turned 23 and nobody can seem to tell us much about his condition. All of our doctors just look at it and say wow what's this? I was an athlete but I was also bullied in school. I just don't want my baby to be held back or made fun of. I want the best for him and I feel guilty everyday that I must have done something, ate something to cause this. I'm terrified.

Comments

I'm the kid

My mom was told she couldn't have kids and then I came along. It was years ago when they didn't do sonograms all the time, so I was a surprise. When I was born she told my dad that she had prayed God would give her a child, she never asked that it be perfect. I thought that was an awesome statement to make in the face of such a surprise. Since then, she's given me many words of wisdom but the best was when I started going through puberty and boys were foremost on my mind. I couldn't understand why the guys couldn't look past the defect and see who I really was. She sat down and told me, "Deb, everyone has a handicap, just some people's are more evident than others." I thought she was nuts back then, but I've noticed since then that she's right. We all have defects. Some of them are physical. Some of them are emotional. Some of them a character defects, but we all have something we battle daily. Don't blame yourself for the defect. Truth is, you're lucky you can see your sons problem clearly. For those who can't see theirs so clearly, they may never have victory. Even after 47 years, I don't blame my mom. She was a great strength and an even more wonderful example of how to face my giants and succeed.

Prayers

Bless you. You are not alone. There are many moms who have been in a similar place as you are. We are here to visit anytime. My daughter is 4 and just finished her first limb lengthening. It is a journey and your child will be super strong through it all. My email is jenniferbethscott@hotmail.com.

my son Isaac

Hi, My son is 22 months old and has CFD as well. He is getting limb lengthening surgery around 5 years old. Just wondering how your daughter made out with her surgery. My husband and I are researching as much as possible but talking with someone who is going through the same thing will be very helpful. Thank, Katie

Athletics & Bullying

As an adult with PFFD & congenital disabilities to my arms, I can assure you that athletics is still on the table for your son. There are athletes in high school sports and in the ParaOlympics with PFFD & just weekend fitness buffs with PFFD. PFFD doesn't restrict many activities until some of the effects of aging start causing pain for some of us older "folks".

As far as bullying, I was bullied much less than classmates. I was class president many times and very popular with my peers (ie. the "normal" kids). I think teachers watched me closer than my peers to make sure I wasn't teased or bullied, but I don't think it would have happened more if the teachers hadn't been watching.

I have achieved all the things that I had hoped and then some at this age...marriage, 10 kids, college, professional job, etc. Many times along the way my disability has been a big help. For example, in college my tution was paid for in full by state rehabilitation funds. My hubby sure wished he had graduated student loan free!

If you have any questions that I can answer for you, please feel free to ask. Also I blog at www.2bcontent.blogspot.com

What a wonderful story...God

What a wonderful story...God Bless..

hello

Hello RachelO
My name is Christa Clawson and your story sounds similar to mine. My Ella was born April 3, 2011 and I too had 2 ultrasounds with "Everything is GREAT and fine" but then to my delivery of my baby girl of 8lbs 7ounces with her LEFT leg MUCH shorter than her right. We were lost for words and the 1st thing I thought of , "what did I eat, or do or smell" everything was what did I do?" WE did NOTHING wrong Rachel, this is an act of GOD, and he only gives us what we can handle, REMEMBER that, I know we hate hearing but it is the TRUTH. We have been to 2 different hospitals here in Canada (IWK in Halifax) and with the Shriners (Montreal) and we will be continuing our care with the Shriners. You will be overwhelmed at first with options and such, but just let him be a baby first and adapt then you will know what decision to make for him. We are going to be fitted with a prosthetic in early April just as she turns 1 years old, and at that time she will undergo a FULL MRI under ansthetic to see what she has for full bones, they say she might not have a FULL hip now or all of her fibula either. So it is ONE DAY AT A TIME. You will be an amazing mother , all you need to do is give him LOVE and support and teach him right from wrong, and be thankful this is a cosmetic problem ( I know it is awful and serious and want BEAUTIFUL babies) and not a heart - brain or sickness.

My Ella is 8 months old now and is a GOING concern, she is crawling everywhere and TRYING to stand up and I say everyday if she had 2 good legs she would be doing more, but now I realize this is WHAT SHE WAS given and she will adapt and learn, she never had 2 same legs to start with to learn on, so they will learn to adapt to what they have. HE WILL blow you away in life. They will be the strongest kids in school, at the park and in sports..... Feel free to add me on facebook to see pictures or just chat.... christa clawson or ethanj16@gmail.com

blame

hi my son kenzie is 15months and his pffd was picked up on my 20 week scan, im from ireland and theres not much or any info here on it, but luckily we have met wit a doc in scotland n he has told us a lot,, i went thru and still go throught he stage of blaming myself but i have another 2 healthy babies before kenzie and i done nothing different with them and kenzie during pregnancy so its just something thats happened :(.. kenzie starts his surgery for rotationplasty in next few months..kenzie has 11cm difference in his legs and original scans showed there was a lot of deformities with his hip but a scan few weeks ago showed his hip has improved (thank god) but each child with pffd is different and surgery options r different aswell we were not giving the option of lenghening as the difference is too kuch and wouldnt be fair putting kenzie through years of lenghening and hes not gonna have great result at the end...

we're new too

Congratulations on the birth of your son! My son Lucas was born on July 2, 2011. It sounds like you've been through a lot already. By chance our ultrasound tech noticed Lucas's left femur looked short and decided to measure both at 18 weeks in utero so we've had some time to prepare but it's still overwhelming due to the lack of information on PFFD. I've found this website quite helpful to get started. From what we've learned so far, they can't tell you much when they are really young regarding treatments because each baby is unique and there is such a variety of treatments available. We've been just focusing on loving him and being amazed at all the things he's learning to do. He was recently diagnosed with hip displasia on his "good" hip and we've got him in a harness (pavlik) to help deepen his hip socket. It doesn't seem to bother him at all!

Of course it's in the back of our heads of what will life be like for Lucas when he's older but from the stories I've read on here most kids grow up and do just fine and that the parent's postivie attitude and acceptance makes a huge difference. And don't worry-you didn't do anything, it just happens.

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