A few weeks ago when we went in for the mid-pregnancy ultrasound we were told the heartbreaking news that our baby would be born with a cleft lip and palate. It was devastating to us, mostly because we didn’t know anything about it. As common as complications in pregnancy are, anything other than a healthy pregnancy is shocking and very stressful. The good news is after some tests the doctors believe it to be an isolated issue, meaning hopefully everything else will be healthy. I got in touch with a few people who have been through this and they were very helpful and informative, reassuring us that while the first year will be very challenging with feeding issues, and surgeries–that for the most part by about one year of age their lives had returned to “normal” and they have beautiful happy babies.
It is overwhelming when I think about what this sweet little baby is going to have to go through but we have come to terms with it and are very hopeful that things will turn out ok. We are now doing our best to prepare for the happy arrival of our new baby boy.
photo of Moses by Aubrey Trinnaman
Chelle and Aaron
September 24, 2009
I'm sorry to hear that your cute family has been going through extra stress with this pregnancy. If you are looking for some good cleft lip and palate resources in SF, Aaron did his research with a Pediatrician at UOP who specializes in Cleft lip and Palate. Her name is Dr. Marie Tolerova and she travels all over the world with a team who specializes in fixing clefts. She is really great. If you have questions or are looking for a specialist in that field she would be a good person to talk to. You can tell her Aaron recommended her as a resource. We will keep you in our prayers!
Stacy Miller
September 24, 2009
I am so sorry to hear that. I had a baby at the same time you had Moses and am pregnant now too. Your news hits me in a personal way even though we are strangers. I'll be hoping this is a small glitch in what I'm sure will be a beautiful life for your new little boy.
nicole
September 24, 2009
your grace is inspiring. i hope it is as smooth a process as it can be.
Kami
September 24, 2009
Hi Jordan – I too only know you through your blog, but I have to say that this baby boy is already so loved, you can just feel it. Will keep you all in our prayers for that first year.
Teddy Started It
September 24, 2009
When I was in college, I had the BIGGEST crush on a guy who was born with a cleft lip/palette. I just love the shape of his lips. It'll all be OK and he'll be beautiful.
Melissa M.
September 24, 2009
I'm sending good thoughts and prayers toward you and your baby. I know you must be excited for his arrival, and I'm sure it will be as wonderful as you hope it to be.
Kathleen
September 24, 2009
We've been through some hardships with my son and many hospital visits and tests. The thing is, kids are remarkably resilient. Sometimes it is harder emotionally for the parents and the kids work through the physical pain faster than you'd think. Plus, there's nothing like going to Children's Hospital to make you look around and realize that you are actually more lucky than you think. We wish you strength and moments of joy after some times of hardship.
Kate@ Kids and Cocktails
September 24, 2009
I'm so sorry to hear about the complications, but I know that whatever the baby goes through in his first few months will make him into a wonderful, caring thoughtful soul. He's your child, so he's going to rock! 🙂
alice
September 24, 2009
I'm so sorry, Jordan. I also knew a boy who had a repaired cleft palate, and I was always intrigued by the slight scar on his upper lip.
Also, Tom Brokaw had a cleft palate. So there you go. (Also Cheech Marin, but we can't have everything.) Wishing you guys all the strength and happiness in the world. You'll all be fine.
[BrookeO]
September 24, 2009
You inspire me.
Brooke Wilson Oldroyd
Reagan
September 24, 2009
hi jordan, i'm a friend of k. smoot and i just want to say that i have an idea of what you are going through. if you have time you should stop by my blog to see my piper jane and understand what i mean. i'm not saying it to commiserate, i'm saying it because you wont believe how much you can handle when you are put to a challenge like this. and you wont believe the love you have for a sick baby despite the less than ideal circumstances. and you wont believe how happy your family can be with the tough situation if you remember to be grateful.
love,
reagan
Bee
September 24, 2009
Hi Jordan: I want to second Damaris's recommendation to see Smile Pinky. The work done by Smile Train in India and elsewhere is amazing. I had already decided that Smile Train would be my charity of choice this holiday season, in honor of friends who would otherwise get knick-knacks; now I will donate in honor of your family, too. Your baby is blessed to be destined for resourceful, empowered parents and I have faith that you will be lifted up by this experience. I wish your family all the best!
Kerri Butler
September 24, 2009
We will all be waiting for him – you beautiful baby boy!! Your love makes him perfect and whole! Thinking of the three of you…
Reagan
September 24, 2009
correction, i can't possibly know exactly what you're feeling right now. and that must be a terribly frustrating thing to hear so many times. although i found out about my daughter's syndrome at the 17 week ultrasound, our situations are very different and i just wanted to reach out to you.
giddygoat
September 24, 2009
He is lucky to have you as parents, and you'll be amazing— as will he of course!
jomama
September 24, 2009
that must be such hard news to hear. don't know what else to say except my prayers and thoughts will be with you and your little one. not to be trite, but everything will be ok.
mskaz
September 24, 2009
Sending prayers to you and your family.
Barbie
September 24, 2009
My heart goes out to you. My boy has several severe food allergies, the diagnosis of which was devastating when it came. Of course, it's life as usual now, but that time of realization and learning is so hard. What a blessing that he will be healthy and strong in every other way. It's sounds like he is very fortunate to have such wonderful parents!
Joanna Goddard
September 24, 2009
oh, jordan, i'm so sorry to hear that. he is so lucky to have such wonderful, smart and loving parents to take good care of him. xoxo
cowgirl in wellies
September 25, 2009
I'm so sorry that you've got to go through all this terrible worry. I know it well. Like many of the people who've posted my baby was ill. Our little one was born at 25 weeks and one of his issues is his palate. He's 7 and doing great now. I've blogged his story, including the happy ending over at cowgirlinwellies. Best wishes and fingers crossed for you and your little one.
liz
September 25, 2009
xoxo
SB in SB
September 25, 2009
I know this is not the kind of news that any parent wants but love can overcome amazing mountains. This is one lucky child!
Elise
September 25, 2009
I'm so sorry that you have to have this trial. But know that your faith will strengthen through all this. My son was born 8 weeks early, hospitalized for 2 months and had to have surgery. Very trying. But my testimony grew immensely just seeing his strength and resilience. Now my almost 3 year old is perfectly healthy and his spirit and zest for life is infectious. Your son is being sent to you because you are exactly what he needs – a loving family!! We will keep you and your son is our prayers.
Caroline Sleijffers
September 25, 2009
I don't know you and came on your blog via OhJoy. Some message to get introduced with your blog. I wish you all the best and heaps of love for the little one.
Katie
September 25, 2009
Though the physical impairments my second son was born with are different, the surprise of having a child born less-than whole is the same. I didn't find out about my sons impairments until he was born and that amputation would be in his future. It was shocking.
I promise you it is just as easy to love a child with an impairment. And that you will be blessed with strength (and good friends I'm sure) during surgeries.
And you just learn all you can about this impairment. It doesn't take long before it becomes part of life. You forget you ever thought your child was so different and wonder why you ever thought it might be so hard.
For what it's worth, I have a cousin born with a cleft lip and palate. She is now a beautiful, thriving, happily married, crazy-fun twenty something.
You'll be great, no doubt.
sam's mom
September 25, 2009
I know two beautiful children born with cleft lips and palette. One was so severe that it went into his sinuses (he's 19 now). Both children are remarkably happy and healthy and though feeding was a challenge the first year the children have no recollection of the ordeal and live totally normal lives.
My prayers are with you during this hard time. Your second son is so blessed to have been chosen for your family.
Allison Profeta
September 25, 2009
I know you don't know me at all, but I have followed your blog for about a year now and find it inspiring! I just wanted to comment on this post and let you know that you should look into finding a local Early Intervention agency after your son is born. EI is a federally funded program that provides therapeutic services to children age birth – 3 at no charge to families. I work at an EI agency in NY. I can give you more advice and guidance in finding one out by you in CA. Your son's diagnosis means that he is automatically eligible for services in NY. I imagine it's the same in CA. You could get him speech and feeding therapy right away. If you ever need advice, feel free to email me at profetamail@aol.com. I'm sure he'll be fine! He's got a wonderful family looking out for him!
Jennifer
September 25, 2009
Jordan- I have followed for quite awhile now. I think I found you through Design Mom. While we don;t know one another, I feel like I have come to know a bit abot you through this wonderful blog. I am 28 weeks pregnant and can only imagine the heaviness of your news. If you are as great and caring a person as the Jordan that comes across this blog, this struggle will only strengthen you. Thoughts and prayers go out to you for a healthy delivery, a happy baby, and strength in this first tough year. Prayers to you from North Carolina.
Britt
September 25, 2009
i know you have lots of comments along these same lines but how ironic that i read this post this morning.
at 11am, my nephew will be going in for his cleft surgery. he's 10 months old and the happiest, sweetest baby in the world.
he is a big chunk and hasn't suffered 1 bit due to the cleft. he knows no other way of life!
the surgery should last 2 hours and he'll be better than ever in a few weeks time!
i know its overwhelming but i cant stress enough how much of a non-issue this has been in this little guy's life!
Elisabeth
September 25, 2009
What a lucky baby to be born into such a wonderful family. I hope the worries and challenges are minuscule in comparison to the joy this baby adds to your lives.
Karen
September 25, 2009
Wow. It must be heartbreaking to hear anything except good news when you're expecting! But also what a blessing that this can be fixed relatively easily and quickly. Hope the doctor updates from here on out are nothing but great!
Jessa
September 25, 2009
My dad was born with a cleft lip and palate (in 1948). His team of doctors did an amazing job back then, so Ii can only imagine the fantastic work being done today. In honor of my wonderful dad (and because I know that I also have an increased likelihood of having a child with a cleft lip and palate), The Smile Train is always on my list of charitable giving.
My dad, like your little one, was blessed with fantastic, loving parents, which makes all the difference in the world. take care.
Genevieve
September 25, 2009
Our thoughts are with you. You seem like an awesome family, and I know you will be wonderful, supportive parents to the little guy…and he will be fine.
Lauren
September 25, 2009
Congratulations on your new baby and positive and open attitude – Nothing can beat that. Your new babe is one lucky guy!
tracie @ {tsj} photography
September 25, 2009
jordan, i only know you through your blog … but wanted to write a note of prayer and encouragement.
how blessed you are with all these supportive comments, makes me smile & warms my heart for you.
while the news you received was unexpected … i pray God's blessings & peace surround you all as you go through this.
Courtney Price
September 25, 2009
My son (almost 2) has a PWT (birthmark) on one side of his face and it was really hard. I felt so silly for being worried about it because it's cosmetic– the rest of him was healthy! I know cleft-pallets can cause other problems–actually, because his PWT was so close to his eyes, my son had a high risk of brain trauma and glaucoma– but it was ALL OKAY. I guess this is just my way of saying that I'm sure that things will work out for the best for you!
Passementerie
September 25, 2009
I'm so sorry to hear that your darling baby will have a tough first year, but with such a wonderful mother to love him and care for him I'm sure you will all come out of it happy and healthy. I'm keeping you in my thoughts…
Jessica
September 25, 2009
Love to you and prayers on your behalf. It is a shock to learn that everything isn't going to be perfect, but you will handle it gracefully. What a blessing for that baby boy that he has such loving, caring, prepared parents to welcome him into this world.
Stitchify
September 25, 2009
Sorry to hear that Jordan. Just thought I'd write you a comment because my cousin's baby just had his second surgery this week. Everything is going great. It's a routine operation, and you all will make it through with flying colors <3
Tiffany
September 25, 2009
I said a prayer today that God would give your family strength and continue to bless your family. I am sorry your little one will have to go through so much his first year. Thankfully God has placed him into a loving and caring home…he couldn't be in better hands. 🙂
Haydee
September 25, 2009
What a hard and upsetting thing to hear. I'm so sorry. It sounds like you already have a really positive attitude going into it though. I've often found that through really hard things come amazing (unexpected) blessings. Who knows the blessings this new little guy will bring to your home and life. I'm sure it will bring you even closer as a family and refine you both even further.
I wish you all the best.
Manus Chau
September 25, 2009
Sorry to hear the news but thank goodness you guys are very positive. Wish you the best.
Bethany
September 25, 2009
My nephew was born with bi-lateral cleft lip/palate and just turned 1 🙂 he is gorgeous and is such a blessing in our lives. God is always faithful through the trials that we go through.
studio wellspring
September 25, 2009
many prayers & blessings to you & your family for the challenges ahead. i'm sure at times it will be overwhelmingly challenging, but you will be carried through to other side & moses' new little brother will be a stronger & braver boy for all of it. with open arms & hearts, anjie & alesia
Stephanie
September 25, 2009
Your little guy will have a thousand cheerleaders out in the world pulling for him and wishing you all well – I'm one of them! Even if the way is difficult at first, hopefully all that positive energy will wash around him and make things as easy as possible.
You and your family will be in my thoughts.
xo
Anna
September 25, 2009
dear jordan, i can't even remember how i ended up reading your post this morning. i've never seen your blog and was just randomly waltzing through crafty sites…
i was born with a cleft lip. the first years will be hard, but these days surgeons can accomplish so much it is really amazing. i've often thought about how to work through feeding issues if i ever have a baby with a cleft. i have one son with no cleft issues but i know the risk of cleft is higher since i have one. one site with some good resources is kellymom dot com, there is a specific page on cleft feeding.
for right now i hope you are able to take some time to be gentle with yourself, to ask for help when you need it, and find peace in the midst of the anxiety.
many blessings, a.
Anonymous
September 25, 2009
hoping for the best for you all.
ZDub
September 25, 2009
I'm so sorry, I know this is weighing heavy on your heart.
For what it's worth, I have a good friend who has a son that was born with the same. He's 7 now and has a scar on his upper lip and is perfectly fine. Her sister also had a baby last year with the same thing and she is currently going through the surgeries with great results.
Hugs to you all.
Maya
September 25, 2009
Appreciate your courage to share.
As hard as this might be now and later when the baby is born, I am sure every little accomplishment will be beautiful and you child will bring you enough and more joy.
I hope you continue to share so that we can support you by doing our bit.
Take care!
karey m.
September 25, 2009
my best to your family…
{and to tell you i'm in awe of your strength? seems like a huge understatement. best, really.}