Birth Defects

J.,

My 8 YO, Maria had the same thing.. Just not the cleft lip.. But the single artery, yes.
Has your daughter or her husband been in the military? and if so, have they gone to iraq or kuwait? Saudi? any of the mid. eastern countries? If so, she could possibly have Gulf War Syndrome. It took 3 years after my own daughter was born to finally get a solid diagnosis.. Until then they all just called it " multiple congenital anomolies" and left it at that.. Maria was born with a plethra more that that, but it was mostly seen through that first ultrasound,, she has macrocephaly, which she is starting to grow in to and it's not obvious unless you mention it,, she has bi-lateral coloboma ( where the eyes are not fully developed.) the dr.'s told me she would be completely blind at birth but she sees well enough to string beads ( the pony beads you make keychains out of) and she writes her name and such. She can play video games and all she requires is glasses. They also told me she would be born not knowing who her parents were and IF she lived her first year she would be on life suport, etc... just a HUGE amount of worst case scenario... We were devistated, and were told to say our good bye's as soon as she was born IF she lives through birth.
When she was born, she breathed on her own, warmed herself up on her own, ( her heart, though weak was able to pump blood on its own to help her thrive.) They were ready to intibate, place feeding tubes, IV's, etc.. I looked at her and told everyone to BACK OFF and hand me my baby. She latched on to the breast and that was all she wrote.No needles, no tubes, NOTHING was allowed till I gave the go-ahead..
Well, Maria is 8 years old, she rides a bike, goes to karate, body surfs when the waves are high enough, collects buttons, rocks and feathers from the zoo. she was born with a cleft palette, which means there was no roof to her mouth, but that's long since grown over and developed. She runs, skips rope, jumps and has the greatest personality even though she has severe autism.Though we were told last year she's completely color blind, she LOVES the color yellow and when I tell her to color the tree brown she pulls the brown crayon out. When I tell her to make the turtle green, she does likewise. Bottom line, when the Dr.'s tell you something's wrong, they prepare you for the worst possible case and it's barely .01% the case when they're sctually born. Treat her like any other kid. Every one wants to know how Maria got so advanced in everything despite her birth defects, but I just tell everyone when shes bad she gets punished. She's not above that naughty chair any more than the other three kids are. When she's good she gets rewarded. Just like any other kid. Dont wrap this baby in silken wool because of what's wrong with her. As a Grand mother and your daughter as a Mother you'll both be able to tell when this baby knows better. You'll both be able to tel when it's time to start teaching her new things.
As a family we group around Maria and include her in everything we do and we do a LOT being an army family stationed remotely amongst civilians. We're constantly on the run here & there and Mo. is in the mix of it all. She has friends, writes letters to them and her new hobby is photography so she has a small digital camera. As well, knows how to load her photos and copy them to disc.
Not bad for a child who wasnt supposed to see anything, have a personality or even live through birth, huh.
She'll be just fine. and remember that God wont give you anything you cannot handle. He sent you all this baby because he knew you'd be the best family for her.
A.

1 mom found this helpful

J...I just wanted to let you know that i am sorry there may be some issues with your new grandson.I will tell you being a mom from both sides of the fence that if there is some issues the doctors today are amzing and it is better to find out through ultrasound then to be "surprised at birth" All three of my kids have some type of birth defect due to defective genes.My oldest was born with a rare chromosomal disorder.We didn't know till he was born.It was devistating.My middle child,due to my older son's disorder was monitered frequently in the womb,because of this monitoring it was discovered she also had a rare condition with her kidneys.Fast forward 6 years and technology has advanced so much.My youngest,was born with the same disorder as my oldest.With the help of ultrasounds it helped diagnose her disorder.It was also found on the ultrasound she had a cleft lip/palate.It was very scary.But because we were informed a plan of action with me/husband and a gruop of doctors was in place before she was even born. I went on web sites with my six year old www.widesmiles.org to look and learn about other children w/ clefts,that way she was prepared and not scared og what Morgan looked like.We were prepared so we had time to adjust/grieve and prepare.Morgan just had her surgery in sept.and you can barely tell just a thin scar.Good luck.And give my best to your family

When pregnant with my second child, I had a similar experience. They noticed a cleft pallate, single artery chord as well as a heart problem that they could not identify without a higher level ultrasound.

Waiting is the worst!!! I am o sorry to hear that you are going through this with your family. My outcome was not very fvorable in the long run. I would be happy to discuss this further with you off-list if you would like. It is a very long story. I offer my support if you would like it.

E-mail me at ____@____.com

S.

Hello J.,

I also found out at my 20 week ultrasound that my son would be born with a bilateral cleft lip and palate. I searched the internet and was frustrated that all of the information I found was so out of date. Luckily, since we found out so early we did our research of hospitals and doctors in the area. We met with people from Dayton Children's and Cincinnati Childrens and we decided to make the commute from Dayton, where we live, to Cincinnati because we were so impressed with their team.

My son had a dental appliance installed at 2 months, lip repair at 4 months and palate repair and nose reconstruction at 9 months. His surgeries all went very well. It is a long road but he is now 1 and doing what all other 1 year olds do. He looks fantasic and we couldn't be happier. If you have more questions please feel free to contact me at ____@____.com. I would be happy to send some pictures of my son to show his progress.

I wish you and your family the best of luck. It is difficult news to take but be thankful you found out this early on. Once my husband and I got over the shock we did our research and by the time our son was born we almost forgot that there was even going to be anything wrong.

Take care,
A.

Hello, first off congratulations and my prayers are with you and your daughter. I just wanted to let you know that I too just had my 20 week ultrasound about a month ago, and they misdiagnosed both me and my baby. They told me my babies organs were developing on the wrong side of the body, and they said I had low lying placenta. After going to a specialist after much fear and worry, they told me nothing was wrong with baby or me. Of course we won't know for sure until baby is born healthy, but I just wanted to let you know that after all my worry I spoke to dozens of women who were told scary things about their baby's fetal development and they were wrong. It makes me a bit mistrustful of the technicians and medical community...some of the doctors do not know how to read an ultrasound and they just go along with what the technician says. Of course this does not mean that the same happened to your daughter, just be aware that mistakes do happen. If they are correct, however, there are several specialists and online communities or local groups that can help you through anything. Much love and prayers for the health of your grandson.

Hi J.,
I do know someone who was told that there was a very high probability that their baby would be a Down Syndrome baby. They went through all of the tests even down to the amniocentisis. In the end they were blessed with a very healthy, no physical or mental issues-all boy baby. These tests can be wrong. However if the tests are correct it is better to find out now so that your daughter can prepare herself a little better for taking care of a child who may have special needs. Also there are some things that can be fixed in utero now that were not possible even a few years ago. We will say a prayer for your family, your daughter and the little blessing she is carrying.
T.

J., I wouldn't worry too much until there is something to worry about. I however was also told at my 20 week US that there was something wrong with my baby's heart but they didn't think it was serious, but scheduled me for a fetal echocardiogram 1 month later. During that whole month I didn't really think too much about it. In fact the day of the apt I almost cancelled because I think I was in denial. Well I went to find out if there was in deed anything wrong with my baby, and I was floored to find out that he did have 4 serious heart defects. At that time I was 26 weeks, and I was offered a late term termination of the pregnancy. Of course I declined that offer. I was also told that he may have down syndrome, but he in fact does not so they were wrong about that. My son is now 1, and yes it has been a long battle, but he never gave up, and I never gave up on him. He is a very happy healthy normal one yr old hitting all his milestones in the proper time frame. He will always have heart issues, but his heart was repaired at 2 days old and that repair has been successful thus far. I know how your daughter is feeling right now, and my heart truly goes out to her. Tell her to hang in there, and to be strong for her son. I will keep your new grandson in my prayers.
J.

Congradulations on your soon to be Grandson.A cleft lip can be repaired very easily with surgury.Don't worry about it until you see it for sure.You will Love him no matter what so why worry yourself with such a minor defect if it is there or not.It could be just not such a great position of him.Where I had my ultra sounds done the tech was not allowed to tell you anything, the Doctor who ordered it should be the one delivering the news one way or the other.

the key to alot of medical conditions is early diagnosis & treatment. a cleft lip i'm sure as you've already read is for the most part a genetic condition. a more thorough ultrasound is a good diagnostic step in visibly seeing if there are anymore outward signs of physical deffects, the next step should be an amneosyntesis and genetic testing, after the baby gets here they can do more tests to rule out other defects. has she had the triple T test done yet? they usually do that between 16-22 weeks, it rules out spinabifida, downs' syndrome, ect. it sounds like she is taking the right steps so far, so i would just keep on the path. some babies with a cleft lip can have minor problems such as allergies while others can have more serious problems, it just depends on the genes. i'll keep you in my prayers, i know this can be a very trying & difficult time. God be with you.

At my ultrasound with my daughter, they told me she had a condition called CCAM. They told me I would have weekly ultrasounds from then on (5mo)to monitor the "cyst" and see if it grew. We faced the possibility of surgery while she was still in my belly. I too went online to see what I could find out and was horrified. They did not even do this type of surgery in Indy at the time. I would've had to go out of state. The "cyst" was monitered and never grew. During labor, the NICU team was on standby and she was taken to the NICU immediately after birth. She spent the first week in the hospital, but her condition turned out to not be what they had thought. It was actually called a pulmonary sequestration. After all of the horrible "possibilities" they prepared me for, she has turned out to be a more than healthy, beautiful, vivacious 7yr old that is giving me a run for my money! The point to the story, things aren't always as they appear. Have faith and stay positive! I saw many wonderful responses already from momma's that faced the same diagnosis as your daughter.

Hello J.. The technologies of modern medicine can be amasing; a blessing and a curse. It is quite possible that your grandson could possible be born with a major birth defect or a minor one. The best advice I can offer you is to keep praying that God's will be done. I hope that gives you some peace.

I think it is a good idea for your daughter to follow up with the testing, but even with that, the doctors could be wrong. I know of people that were told their children would have all sorts of birth defects, and those children ended up being as healthy as can be. For me, all of my ultrasounds were just perfect, yet my son was born with a soft cleft palate that went completely undetected until the day AFTER he was born. They didn't even find it upon his birth. It did cause feeding issues, etc. and was not quite as simple a defect as they thought it was initially. But the point is, ultrasounds are nowhere near perfect so there may be nothing to be worried about at all. I hope that is the case, keep us posted!

Hi J.. I know you've gotten a lot of responses but I wanted to respond too to try to ease your worry. My son also had two vessel cord (single artery) which was found on our ultra sound along with a spot on his heart. The doctors told us that the two findings together suggested higher likelihood of other defects. But he was born perfectly healthy and completely normal. The only impacts to us were increased worry, being placed in the high-risk pregnancy category and we couldn't donate the umbilical cord. I know every pregnancy is different but try not to worry too much! Jenn

Hang in there--sometimes things that seem to be there at twenty weeks aren't there at term. Usually clefts at birth can be repaired at six weeks; sometimes the cleft is minor, so you will have to wait and see. In the newborn physical, a baby should have two umbilical arteries and one vein. If the baby doesn't have that, it often is a clue to look for other problems. Often, there aren't more problems, so I would just keep praying.

Hi J.. Congratulations to you and your daughter. Although I personally have not been through this, my niece was diagnosed with a very similar situation. When my sister-in-law was about 20 weeks along they discovered there were only two umbilical arteries and they also discovered that the baby had a cleft palate (among several other issues). When Andrea was born, she did have a cleft palate (hers was on the inside of the mouth - on the "roof" of her mouth). My brother and sister-in-law had to use a special bottle (provided by their doctor) to feed Andrea. And she eventually had surgery to close the cleft palate. She struggled slightly with her speech as she was learning to talk... but has no problems now. Andrea is now a healthy and happy 7-year old who thoroughly enjoys school. Keep up hope and faith... I will pray for your daughter and grandchild. God bless you all!

I don't know much about this but I had a friend who just had a baby and she also had a single umbilical artery. They told her all the defects that could be caused due to it, but she had a perfectly healthy baby. Rest assured that it is possible for the baby to be just fine.

Good luck to you daughter!

I had a single umbilical artery. I also found out during my 20-week ultrasound and was very scared. I had to chart daily kick-counts, go to weekly non-stress tests and had ultrasounds every other week until my daughter was born. She was perfect. She is now 14 months old and a complete joy, no issues. If you click on my name and find my post entitled "Single Umbilical Artery" I believe, you can read my origional post and all the wonderful responses I received. I read them everytime I got scared or overwhelmed and it really helped. You can print those and also the responses you receive here and give them to your daughter. My prayers to your family. Feel free to contact me if you want any other information!

I don't know anything about the umbilical cord, but my daughter was born with a fused cleft. It was never picked up on my 20 week u/s...a whole different issue that I don't even want to get started on. But when she was born it was very clearly a fused cleft. We were lucky enough that it healed on it's own and, so far, hasn't given us any problems. She does have a scar that runs from her nose down through her lip and the left side of her palate is thicker than the right side. Her nostrils are also different shapes. The right one is more of a circle and the left is an oval. I've taken her to an ENT and he said that there were no problems with her sinuses. Since the left side of her gum is thicker, she has a hard time cutting teeth on that side of her mouth. Her front tooth beside the middle two (her eye tooth maybe?) seems to be sort of stuck. It broke through the skin, but hasn't progressed very far. I guess I'm saying that it is possible for the cleft to heal on it's own. If it doesn't, he may have to have surgeries to heal the cleft. At this point in her pregnancy, lots of things could happen. I would suggest that she try to take a deep breath and pray for the best. Easier said than done, I know. If I can be of any help to you or your daughter, please let me know.