10 months
Frank Joseph - 15 months old
I have been following this blog since it started, which was not too long after my son Frank was born. And I have been meaning to write his story for the same amount of time. Today is the day!
Frank was born November 25, 2009, which was the day before Thanksgiving that year. It had been a rather easy pregnancy, except that I had gestational diabetes again. Frank is our fourth child, and my three previous pregnancies had all been complicated by gestational diabetes, resulting in ten pound babies delivered by c-section. This pregnancy, I had a new doctor, and though I noticed how much smaller I was, she was not concerned. She assured me I was on track to have a healthy seven pound baby. This should have been a red flag for me since I don’t have seven pound babies, but she said not to worry about it, so I didn’t. Sure enough, he was born at 37 1/2 weeks by repeat c-section weighing seven pounds three ounces.
I didn’t know there was anything wrong at first, although my husband told me much later that he knew right away. I was flat on the operating table and couldn’t see what was going on, but he noticed the doctors and nurses looking Frankie over with lots of whispering and pointing and looking at his facial profile and body. My husband chose not to share his concerns with me until he had more information, which I think was very wise. I am so thankful for that first beautiful night before any worry set in.
He was healthy and beautiful, and only late on Thanksgiving Day did a pediatrician begin to express some concerns to us about unusual physical features. To be honest, I hadn’t noticed any of them. Only as the doctor pointed them out one by one, did I start to see it… the broad nasal bridge, underdeveloped ears, a hypospadias, sacral dimpling, a tongue tie, and a recessed chin. Genetic testing was recommended.
We initially heard back that the genetic results were normal, but our pediatrician recommended we meet with the geneticist in person anyway. So we did. The geneticist spent an hour looking him over and asking us questions. It was really quite uncomfortable, as she wouldn’t tell us that everything was okay, even though we had already received “normal” results. When he was three weeks old, I had just returned home with Frank from the urologist’s office where we’d been to discuss his hypospadias. I was in tears, overwhelmed and confused about why there were so many little things wrong and why he wasn’t eating. The phone rang and it was the geneticist. She said that after seeing him in person, she’d had a suspicion about a particular syndrome, so she had done FISH testing. I remember losing my breath as she continued talking. All I heard was wolf hirschhorn syndrome. I didn’t hear anything more. I fumbled around for some paper and wrote it down. I had enough sense to ask her to spell it, but that was about all. She asked me if I had any questions, but I was just too stunned to even respond. I didn’t say anything. She told me to give her a call in a few days and hung up.
It took a few days to get all the information, and none of it was good. I think the timing of receiving such news makes a difference. I’ve heard a few people mention feeling relief to have an answer to their child’s problems. But I didn’t feel any relief. Even with a typically healthy baby, three weeks postpartum is a chaotic and difficult time. To get news like this… the information we received about WHS was so dark and scary… I fell apart. From what I was learning, I thought he was going to die. Unfortunately I let this hinder my bonding with him for a few weeks. I think I was afraid to love him too much, if I was going to lose him. I can’t tell you how much I regret that.
After the first of the year, I somewhat came out of the dark cloud and realized he wasn’t going anywhere (thank God) and that although we had big challenges ahead of us, I’d better get to loving on him! My sister found a blog (Our Little Pickle, about sweet Dylan), and she connected me with Kristy. God bless Kristy. She took an hour out of her day one day to talk to me on the phone. I don’t remember what we talked about, but I remember hanging up and feeling like I could be okay. And we truly had a wonderful first year. Frank has been remarkably healthy: a small VSD in his heart spontaneously closed; we had concerns about his vision when at four months of age he didn’t seem to see anything, but his vision eventually developed in full, although it was delayed; we had his hypospadias surgically repaired without any complications; he has had no hospitalizations; and thus far he has not had any seizures.
He does have significant developmental delays and is very small for his age. Although he was a “whopping” seven pounds at birth, it was because of my diabetes that he was so big (remember my other kids were ten pounds). He has only just crossed the 14 lb mark at age 15 months. He rolls over like a rock star and has great neck strength, but he does not sit, crawl, or even scoot. He’s only recently started being socially responsive, but we are so excited to see that. And he has just in the last week made some attempts at reaching out to touch things. SO exciting!!
Frank is truly a delight in our family. His big brothers and sister love him, and he brings his dad and me great joy. We pray his good health continues and that his development, although slow, will continue moving forward. We’re hoping to see him sitting soon and maybe even crawling/scooting by the time he is two. Writing this out has been very therapeutic, and not nearly as time-consuming as I somehow thought it would be. So I won’t wait another fifteen months before updating!
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Thanks for introducing us to Frank. I just love his photos! He is very cute! I’m so glad he is doing great. He looks very happy and very much loved.
Heather-wow, Frank has come a long way since seeing him back in July. He looks like a little boy now. Thanks for taking the time to fill us in. I was wondering how he has been doing. Love his smile.
Frank is such a cutie! 🙂 I think hearing the diagnosis and reading/hearing all the scary things about WHS is the worst part! It was scary for me, I thought I’d have a vegetable baby that wouldn’t even know who I was! But Emma has proved that to be wrong! Frank’s doing well, it sounds like, and I look forward to hearing more!
Heather – I love you and Frank and I am so glad you shared his story. I am also so very glad that your sister found me and that we were able to talk. I remember that phone call like it was yesterday. We talked about our fears, emotions, family, life, well everything. I was so happy to have hopefully eased your fears and given you some hope for happiness. I am so happy to hear how well Frank is doing. I love the pictures, he is such a handsome little man. Keep sharing your journey. I think of you and Frank often and pray for your family every day. Hugs to you all. 🙂
He is so cute. I also understand the shock of the news. When we got Blake’s news,I went home and the only thing I could find were medical journals and they only told me horror stories. I am so glad this web site is now available. It gives parents hope and also give them accurate information. Just love every minute of him. He is such a gift.
I was also scared to love Harry at first.I think your self defence puts up a wall. I think the medical sites paint a very negative outcome. thanks goodness i found this website which gives me so much hope. I cant wait to hear more about Frank he is a wee stunner!. Take care xx
Heather, Frank is such a handsome little fella – I just can’t get enough of that smile! Reading your moving, and beautifully written, account I can relate to a lot of what you went through in those first few weeks. It is heartening and uplifting to hear how you and your family have progressed and grown stronger thanks to Frank. I look forward to hearing more in the coming months, and I’m sure he’ll be sitting up in no time.
Heather, I can relate to your story on so many levels. I was also completely unprepared for the diagnosis of WHS when Kaylee was born. I had had an amnio at 18 weeks, and the results came back normal. The doctors, although concerned about the fact that the baby was growing so small compared to my other pregnancies, never sought additional answers– they accepted the test results as definitive– so I prepared mentally and emotionally for a petite little girl who would fulfill my dreams, and I tied my tubes, thinking that our family was complete and that we would not want to have another child. It has only recently come to my attention that there was an egregious misreading of my amnio results, and that I should have known prior to giving birth (a story for another time). In many ways, I wish I had been prepared because, like you, the news I found online was devastating, and it affected my ability to bond with my daughter for well over her first three months. I didn’t want to hold her. I stopped breastfeeding because I resented being tied to the pump. I feared that she would die in her sleep. I wanted to die myself to avoid facing the future. It really does help to find that special someone to connect you with someone who can alleviate the fears and offer reassurance that reality may not be as dark as research shows. Frank is a GORGEOUS
Heather, I can relate to your story on so many levels. I, too, was completely unprepared for Kaylee to be born with WHS. I, too, had had tests done– an amnio at 18 weeks– that I was told came back with normal results. I, too, had difficulty bonding with my daughter for well into the first three months of her life because of intense depression, resentment, anger, and fear. However, the key is to find a support system of moms who will let you know that you are not alone in the journey and that will celebrate those little victories that most other parents cannot begin to fathom. Frank is a beautiful little boy with the most amazing blue eyes~ he will continue to amaze you. I am so happy to be able to get to know Frank; keep the updates coming! xo
Heather,
Your story brought me to tears. I’m happy that you are not in the dark cloud any more. As hard it is to get out of there, it’s worthed. Our kids are worthed.
Thinking of you and Frank and hoping to meet you one day soon. I know you guys live in the Chicago area…
Nice to meet you Frank! Cant wait to hear all the new progress that you’ll be making. He sounds alot like my daughter Sabrina, doing the same things round the same time. She is 21 months but was born 6 weeks early. He is such a cutie 🙂 LOVE the red vest – So smart!
Frank is so cute! Thanks for sharing your story. I’m looking forward to following your updates!
this story sounds very similar in a lot of ways to our little Anthony. At five he has started walking, but has some club foot issues so it is a challenge. We work and work on things for it seems like forever and then like overnight he gets a new skill. It is so exciting. Also one way I look at is that Anthony is our little surprise last fifth child and with all the others we said “oh if they could just stay little longer they grow up so fast” well we got a chance to watch all the miracles of development in slow motion and every day is a gift. Every step of development is exciting. still no talking at least that we can understand but lots of gestures and “communicating”. He’ll get it in his own time. I asked God to give some verse for Anthony and he brought to me mind “take no thought for the morrow” just take it one day at a time!