Pregnant with a Turner Syndrome baby...

Elizabeth - posted on 05/02/2009 ( 27 moms have responded )

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Hi,



im new to Circle of Moms.. I was looking to see if there were any groups about Turner's Syndrome because I am always looking for success stories.. I gave birth to a VERY healthy 9lb 5 oz baby girl April of 2008.. now I'm 17 weeks pregnant with a little girl who has Turner Syndrome. I found out through a CVS I had done at 13 weeks due to an abnormal first trimester screening,. My little girl has a large cystic hygroma, fetal hydrops, a hole in her stomach and now a swollen head. I am having a fetal echocardiogram done on May 13th to find out if there are heart defects. Pretty much every doctor I've seen has tried to suggest terminating (in their own lovely way) and my husband and I could not bring ourselves to do that. They say her condition is so severe that they feel she will have heart failure before she makes it to term, and if she did make it to term, she would need complete reconstructive surgery to LOOK remotely normal, series of heart surgeries and who knows what else. We have not heard her heartbeat yet, we have only seen the flicker of it on the sono screen, and seeing her little legs moving around is what we use to determine if she is still alive. Being insulin dependant since I was 19 years old, my pregnanies are high risk to begin with.. so this is just making things more complicated. I am praying for a miracle, but I keep being told that the hydrops along with turner syndrome leave her with less than a 1% chance to make it. the hydrops are covering her entire body...



I am wondering if there's anyone on this site who has successfully given birth to a Turner Syndrome baby who was showing complications in utero... or if anyone has had similar complications with a baby during pregnany, and how you were able to handle it.



Liz

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I know this post is old but I thought I would write just in case someone comes across it later. I just had my daughter, Alyzabeth, almost a month ago and she had TS. I was 15 weeks when they called me and told me that my blood tests had come back abnormal. We had an anatomy scan done at 16 weeks and it showed my baby to have a swollen head, swollen abdomen, small left ventricle in her brain, major heart defect, short limbs, and a very large cystic hygroma. Also, at this point she was so swollen that we were told by two different doctors that she was a boy. Her physical issues were so bad they thought she had Trisomy 18 so we done an amniocentesis to find out for sure. The results came back nine days later and they showed she was a girl and she had TS. We done another ultrasound and all her swelling was gone and her heart wasn't having to work so hard. They still only have her a 5% chance of survival due to her severe heart defects but I got my hopes up anyways because my prayers had been answered to heal her swelling! Unfortunately, we went for a routine visit with our midwife two weeks later and no heart beat. I screamed and cried for hours and hours. I went in the next morning and was in labor for 20 hours until I gave birth to my precious baby girl. This is the hardest thing I have ever been through but I can say that you will make it through. It does not get easier. I have a memory box with her little hat and blanket and pictures of her from the hospital as well as her tiny little ern from her services next to her heartbeat bear and just looking at them makes me cry sometimes. I have to find comfort in knowing that my baby girl is in Heaven with our Lord and she will NEVER feel pain or heartache of this world. She is having a perfect life and that is heart warming. If you are going through this do not lose faith in your baby please! Give them a fighting chance because there are babies born who survive this! If anyone needs to talk about this please feel free to message me...Everything will be okay!

Shermeem - posted on 03/14/2012

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Me and my husband went for a scan early on when our baby was 8 weeks gestation. The sonographer told us that there was something wrong with our lil girl as the NT fluid was measuring 4.2. We was sent to the head midwifes office and she discussed the possibility of downs, edwards and patau's syndrome with us. She said that we should consider having a cvs done. We agreed and went for the test about 2 weeks later. By this time the fluid had increased yet again to 5.5 however we could see our lil girl moving her hands and feet abd her lil heart pumping away. The next day our consultant of fetal medicine rang us to tell us that our lil one had Turners syndrome (this is how we knew we had a lil girl) he went through the disease and explained that only 5% of pregnancies go on to be born. We knew that we wanted to continue with the pregnancy and give our lil lady a fighting chance. 4 weeks later we was back for another scan, yet again her lil heart was still beating, by this time i was 14 weeks pregnant and was feeling more optimisitic about the pregnancy continuing even though the fluid had increased to 14. We started to think about preparing ourselves for a baby with Turners. Our consultant gave her a 1 in 5 chance of survival but we thought those odds was still achievable. 2 weeks later we was due another scan at 16 weeks 2 days :( no heart beat. then 4 days later i was due to go to hospital to be induced however early that morning at 3 am i started with cramp and then bleeding. She was born just as i arrived at hospital. it was very traumatic... that was 2 days ago and im heart broken, feel so empty. To anyone going through the same i hope and pray you defeat the odds.

Charmaine - posted on 05/16/2013

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Hi There I am new to this site and my name is Charmaine I am born with the Turner Syndrome I am 34 years old and happily married, we tried to have children of our own and ended up having two miscarriages, other than that I am having a normal life with no health problems my lungs, heart, eyes, ears and kidneys are perfect so people with TS can live normal lives I never get sick only get the normal cold and flu like any normal human beign.

I am so glad and hank GOD that my mother decided to go ahead with her pregnancy with me and not aborted me.

Please ladies pray and asked GOD to help you make the right decision.

Hope all goes well

Melanie - posted on 07/13/2013

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Hi im melanie im 20 and pregnant with my first child. Im 15 weeks by my last period dates but went for my first scan wednesday and seen the baby was measuring small, also me and my partner got the news that there was alot of fluid gathering around the body, back of the neck and around the lungs of the baby. We wer told there was something seriously wrong wit our baby and will more or likley die very soon with virtually no chance of it going full term and if it did it would die anyway. We were devistated our world turned upside down. We were referd to another hospital to see a specialist who also did a scan and confirmed the same but this time we had hope she said that she seen cases like this where the baby did survive and sometimes it can be treated determing on what the diagnosis is. Next week i wil be sent for an amniocentesis to see exactly what is wrong . From my reserch and looking at the scan i believe my child may have turners syndrome. I would like to know if anybody else has has a diagnosis like mine and has the baby lived? We are holding on to a string of hope & faith .yesterday our baby had a strong heartbeat and was moving which means its a fighter , we cant give up hope. If anyone knows anything that can help us please let us know , thanks.

Cransh02 - posted on 09/13/2013

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Hi,
If any of you TS momma's need any questions answered I can help I have TS and am 23 years old and I am in touch with several TS women. My name is Caley and my email is shortgirlwithattitude@yahoo.com

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Sonya - posted on 02/12/2014

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I was blessed with a TS daughter , Peyton , we did not find out she had turners until she was 4 years old we have started on Growth hormone and along with her having hypothyroidism,she is perfect. In the year since we started the daily injection she has went from being off the growth chart to 7% for her age. We did all the testing and nothing seems to be a issue except a little farsightedness which is so minor . I am reading all of the other comments and thank God that he choose us to have her. I continue to worry about the future when she says all she wants to be is a mother and trying to figure out how to explain things fully to her later . If anyone with a TS girl with same issue please help me.

Tabitha - posted on 12/13/2013

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hi my name is Tabitha . I hope you have a good outcome. we had very similar experience. our baby girl Melody. She is our angel baby and miss her so much. she had a bad case of hydrops and trisomy x (turners syndrome) unfortunatel we lost her around 5 months in utero. I was induced. their are cases where the babys make it. just rare. but you could be that case good luck!

Brandi - posted on 11/13/2013

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My name is Brandi I am 23 yrs old I am on my 3rd pregnancy. I had the down syndrome test yesterday and when my doctor came In she said she was going to send me to a specialist because she believes my unborn has turner syndrome and cystic hygroma also I am so very scared and if it all comes back positive I don't know what the next step to take will be...I don't even know what it is yet (boy or girl) and I've done research and I know girls can survive but will have problem but boys cant survive out side of the mother I fear the worst but pray for the best.....you are so very strong and me and my husband have decided if this goes like they say I can not terminate because this baby is a life regardless and I am praying for you and yours and I am inspired by your story because I am not alone. Much love from Georgia ♥

Jo - posted on 07/18/2013

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hey there all,
just came along this site looking for more information about what happened to me and my precious, beautiful little girl...
i didnt get any scans, and was hoping for a all natural water birth, to my complete surprise and HUGE rollercoster ride was about to begin.. on the 26th may my girl wanted to come out a million miles a hour, i was able to hold her in for around 5 hours until the neonatal team arrived..she was born at 28weeks alive.. heard one small little cry then the journey of hospitals, tubes, drugs and grief was begining... we spent the next 6 weeks in hospital, while our girl did her best to fight for her life... it wasnt until around 5 weeks into the journey they found out she has Turners Syndrome.. she didnt grow while in hospital, as she was unable to process fluid, it was all going to her 3rd space and around her lungs... crazy crazy journey... she has now gone to better place, she past on the 8th july.... but man did that girl receive so much love in her time with us... just wanted to share, and see if anyone else as given birth to a prem baby with TS and has had more children???? this was my first, and i have always wanted to be a muma.. would love to hear any stories... bless

Miss Maria - posted on 05/14/2013

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hi liz ive just signed in so im new, read your post i went through the same in 2010 went for my 12 weeks scan but turned out to be nearly 16weeks thats when they told us the bad news that the little girl i was carrying she had turners syndrome. the next day i had another scan to confirm it, but we had already made up our minds to have a termination not a nice word i know, still moving round she still had fliud gathering round her body we was told this would never go and she had only 2 percent to live she would never of made it. Thats why we are happy what we did she had a bad heart and a horse shoe kidney but i do have nice memorys of her a memory box with her photo and details. U will never forget her, the same as i wont how do u feel now maria xxxxl

Shelly - posted on 02/16/2013

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Hi. This is for you Kate. I am so happy to read your story about your beloved daughter. I'm so happy to hear she has been able to lead a happy, normal life. I remember when we found out Alli had Turner's I did so much research on what it was, and thought we can live with all of that. Just please God, just let us have her. I'm sure your daughter is so beautiful, and I wish her the very best that she one day gets her own child. I wear a turner's bracelet, to keep my daughter's memory alive. Nobody knows what it is, nor understands the chromosomes when you tell them. But then again, I didn't either before all of this happened.

Kate - posted on 02/15/2013

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Turner's mom here . . . my daughter is almost 25 now. She's married; she has a degree in French; she adopts stray animals; she has a silly streak; she wants to get pregnant; she's a great dancer; and her feet are still puffy, which drives her crazy b/c she loves nice shoes. :) A fine, beloved woman, in other words.

When they told me after amniocentesis that she "wasn't normal" I was devastated. I had waited so long to be ready to raise kids, and here was this doctor telling me that I might not want to give birth to this one. After I read the literature I was just confused -- it didn't seem like that big a deal, being short and needing estrogen. I knew there could be other complications, but that's true for every child. None of us becomes a mom because we think our kid is going to be perfect, right?

Recently I read an article that answered a question I've had for a long time: which of us gave her that single X chromosome? The research shows that when TS girls get their dad's X, they tend to have far fewer social problems than when they get their mom's. This is something that I think TS moms do need to understand . . . our TS girl was -- in terms of social development -- more like a boy. She didn't pick up on the cues that other girls seem to get easily and was often confused about what her peers were up to.

Not fun, but not necessarily traumatic, either. She needed a lot of coaching that her younger sister didn't. She needed to practice, for example, looking people in the eyes, things like that. But it was NOT insurmountable. She did take longer than other girls to get the hang of communication/social skills, but once she got them, she got them.

Anyway. I came across this thread because I was talking with her the other day about the issues that will go with trying to get pregnant by IVF, and I did a search for Turner's and pregnant . . . and here you are, living through what I did 25 years ago.

I was so terrified! I just wanted to tell you that it can turn out just fine, and I really wish there had been someone to tell me so when I was five months pregnant.

Shelly - posted on 02/13/2013

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Hi. I'm new here and I came across this site. I just wanted to share my story on TS. Turner's is only in females and it's because they are missing an X chromosome. Girls have XX chromosomes. A turner's baby only has X. It effects 1 in every 2000 girls. I found out at about 16 weeks along that we were going to be having a baby with TS. It wasn't good news, but we accepted it. We found out through an amniocytses. Then as time went on, we found out our baby girl also had pleural effusion, non-immune hydrops, and a cystic hygroma. It would be a true miracle if she made it to term. But she was a fighter, she made it to 29 weeks. Our Alli lost her battle and was born at 29 weeks on 7/12/06. When she was born, we couldn't believe she had made it that long, she was so sick, but she was so beautiful. I wish you all the very best.

Mandy - posted on 02/06/2013

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Hi Elizabeth,
My son and his fiance were diagnosed with a turners syndrome baby, apart from one dr they have had constant pressure to terminate the pregnancy. They were first told the baby had downs without any proof. Their daughter has a very large amount of fluid around her that hasnt decreased, and she has probs with her heart which they say can be dealt with at birth. They have had many scans, she is now 18 wks tomorrow. The baby has a very strong heartbeat which they have heard, and she sucks her thumb and rubs her face. They have constantly been told there are probs with the baby, that they will have trouble coping and that she has 80% chance of miscarriage. Their daughter so far has proved them wrong, she is a fighter, and as long as she is fighting, so are we. The truth is they never really know for sure the final outcome. Dont be bullied into giving up hope. Life in general throws up all types of life changing probs, this is your child, and even if she does have probs, doesnt mean she wont have a good quality of life. Good Luck. x

Amber - posted on 01/14/2013

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This sounds like ts to me Carmen but I am not a doctor. My daughter, now 8 years old, was born with puffy feet and hands, she was diagnosed at birth with ts. This isn't always a sad situation, my little girl is doing great, we have had a few bumps in the road but we have managed. People Please don't think you have to terminate your pregnancy due to a ts diagnosis because you never know how mild your girls case could have been if you do.

Taylor - posted on 11/13/2012

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I have the same situation as you I'm 6 moths pregnant and my bat girl was diagnosed with turner syndrome. :( its a sad situation but you have to accept and be prepared for what is about to happen next.

Carmen - posted on 10/18/2012

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I was just told by my doctor that my daughter has turners syndrome. He gave us a packet to read and it was very hard to take all this in. My daughter showed only swollen hands and feet at birth. They also thought they noticed a cystic hygroma, but it was the coronary heart vessel. She was born with both her hands and feet swollen, weighed 4 lbs and 10 oz. I delivered by c-section at 36 weeks due to no amniotic fluids in me. She stayed in the NIC U for about a week. heart eccho came back good and so did kidney function. Her blood work also indicated TS. Do these sound like symptoms of TS. I'm considering a second opinion. We're so scared to death what this could do to her in the future.

Jennifer - posted on 09/18/2012

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i just received a call today from my doctors office... on September 4th 2012 i had to go to the hospital to get a d&c done since a few days prior i went to a routine check up and they did a ultra sound and the baby was just there not moving no sound no flickering!! It broke my heart on aug.30 2012 i went to the doctors office and sat on the bed to get my ultra sound and a midwife ended u breaking the news to me that my baby had passed away... at that time i was 10weeks2 days and the doctors told me that the baby measured 9 weeks 6 days so my little peanut passed away on Monday aug. 27th.. I felt so depressed and lonely i didn't want to get the d&c since i felt they would be taking my baby away and i didn't want such an invasive procedure... well i basically decided to go threw with it on September 4th 2012 i had my d&c done and my baby was removed from me i asked my doctor to send my baby to get tested.... to me hearing it was a chromosome defect and that's all was NOT good enough... well today Tuesday September 18 2012 my doctor received my results from the lab who tested my little ones chromosomes.. I found out my baby Angel had passed due to turners syndrome and my little one was a girl.... I love my baby girl... part of myself is scared that if i conceive again i dont know what my risks are and if i will need to see a genetics doctor... If anyone could give me some advice it would be greatly appreciated...

Shawna - posted on 07/31/2012

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Hi,
I am new to this site and came across it looking for support groups or success stories. I was told yesterday that my baby looks like she has turner syndrome that she has fluid on her lungs, brain and in her abdomin. They said her case was really bad and that they didn't expect her to make it full term and if she did she wouldn't survive. I am terrified I have never gone through anything like this before but have read many success stories so I am hopeful and staying in prayer becaue I know God will have the final say so. Of course really the only option they gave was to terminate the preganancy but seeing her little hands and feey moving around and organs functioning I can't bring myself to do this. I just pray that in the next few months I am writing my own mircle story for my daughter.

Cheryl - posted on 07/08/2012

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actually turner syndrome ONLY affects girls and the risk factor i 1 in 2500 live female births. In general a female is XX a male XY. with turner syndrome it's X0 (missing x chromasome) while colidal silver may help with certain conditions it WON'T cure any type of chromasome problem. An amnio will show if a baby has turner syndrome but it does carry a risk of miscarriage Sadly most babies concieved with TS do not make it to a live birth, the ones who do tend to do well in life

Michelle - posted on 05/21/2012

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Liz. I took the liberty in checking it out about this turner syndrome in infants. Girls are more affected by it. But it is about the x chromosome that the girls have. some girls may have 2 or even 1. There are only 1 chance in 2,000,000,000 for a baby to have this. The side effects are swollen hands, feet and a widened neck. And this is only a genetic disease. I think some of these doctors are pulling your leg. What I have heard on the radio. I know that you can't go by everything you hear, but on the radio, there was a guy talking about doctors getting paid more to get pregnant women to have abortions. Don't know how true it is, but if so, then this could be part of the problem why woman are being told that their children has defects. you had said that the doctors had told you that your baby wasn't going to make it to the first trimester and she did.
Besides, if looking it up about this turner syndrome, it says that the x chromosome is what tells you if it is a girl or boy.. without it, you can't know it. Does that makes since to you? if a baby doesn't have the chromosome, then you dont know what the sex is. the baby has to have the x chromosome to find out if it is a girl. and the turner syndrome is supposed to be making the baby lack the x chromosome. It doesn't sound right if you know what i'm saying.

All in all if you look up about colidal silver (soverign silver is the best brand), it heals and treats all types of diseases, viruses, bacteria and etc. It has treated aids, hiv, and when looking up about this turner syndrome, it has treated this as well. If you take it while pregnant, it would heal this if your baby really has it. I've taken this while pregnant myself. It is natural and safe. taste like water. safe for infants and up.Check into it. Your baby may not even have this. I would get other opinions before I would even listen. If there was something seriously wrong with your baby. I believe if she has a hole in her and her heart isn't right... I would think that God would allow her to miscarry. Hope this helps you .

Michelle - posted on 05/21/2012

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I'm sorry for the heartache you are going through. I have not had a baby with this turner syndrome. But, I wanted to write to give you my opinion. You cannot always go by what doctors say. There has been woman that had been told that their babies are going to be deformed, and so on. The doctors told these women to have abortions. Some of the women however did and regretted it. Some of the women didn't and they gave birth to healthy, normal babies. There was nothing wrong with these babies. I had my first son c-section because I was told that my baby was going to die and me too if i didn't have my baby right then and there. My baby was born healthy with no problems at all. The only thing when he was born was having the umbilical cord around his shoulder. That was it. My other son had the umbilical cord around his neck and i didn't have a c-section for that if that was the problem.
I will pray for you and your baby. May God bless you both.

Fernanda - posted on 05/18/2012

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Hi Tina! i've been in a similar situation... i went for a US with 8 weeks, and the midwife saw something abnormal with my baby, the NT was 7,5mm... i didnt know what that means...and the midwife didnt explain me very well, i was very sad, because she just told me that my baby couldnt survive! so they send me to a doctor (fetal specialist) and i made CVS with 14 weeks, one week after the results came back, and my baby has TS, so the doctor starts to explain me, e told me that she can have a normal life, me and my husbund were happy, because my baby had a chance to survive...but the doctor told me that i had to come back in 3 weeks, to check the cystic hygroma and the fluid around the neck, i went yesterday, i'm 17 weeks now, and we havent good news...we done another ultrasound, and she has a swollen head, swollen abdomen, and some fluid around her heart...so she got worse...and the doctor wasnt with a good face, but he told me about his experience...he thinks her heart will stop anytime... have been really hard those days for us! i dont know what to do, but i'm suffering a lot, because i can loss my little girl,,,i'm feeling some pain on my belly...i dont know if is this normal... we are just praying for everything gona be ok! i have to go back to hospital in 2 weeks!

Sugargirlcountrygal - posted on 01/10/2012

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your posts are amazing it gives me hope I am having a cvs on Friday and am very worried. They first suspected downs but now they are leaning more towards turners I am 13 weeks pregnant your posts are very inspiring and are keeping me somewhat hopeful if I have to face this issue.

Sarah - posted on 09/02/2010

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hi my name is sarah mcgarr i have a little girl who is 15 months old with turner syndrome the doctors told me to terminate 2 but i said know its in gods hands the told me the baby would be still born and everything i had a very stressfull pegnancy the baby did have a coartation of the arotic valve and she also had fluid that was covering the baby's neck and heart 2 weeks later it went away when she was born had to have heart surgery was very succefull had to stay in the nicu for a month but is perfectly healthy now still has fluid in her feet and takes medicine for high blood pressure but she is the happiest baby ive seenand very smart no deleys so keep the faith

Beth - posted on 04/09/2010

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Liz,

I wanted to let you know that I gave birth to a beautiful baby girl with TS on March 4th. We had a similar situation to you and your husband...we were diagnosed through amnio at 17 weeks after an abnormal NT scan. Our doctors pretty much guaranteed that she wouldn't make it much longer and also suggested in their own ways that we may just want to terminate the pregnancy. We were fortunate that she didn't have a hygroma or hydrops, but she did have fluid around her heart. The day they saw it they told us that she was in the beginning stages of heart failure and again made sure we knew that termination was an option. We decided to let our baby girl decide her future and not the doom and gloom doctors. The pregnancy was very difficult. Knowing that your baby has a 5% chance of survival at best is a hard thing to deal with. The best advice I can give to to stay positive and not to read about TS on the internet. The only research I kept doing was with the "New Mom of Turner Syndrome Baby" group on Baby Center. It was so helpful to chat with Mom's who had beautiful baby girls who beat the odds. One Mom in particular has a very similar complications as your baby is having...she actually started the group. Her baby is so adorable and full of life. These babies are fighters and miracles do happen:) I will be thinking about you and sending good vibes your way.

Beth

Jennifer - posted on 08/19/2009

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I truly understand the frustration, anxiousness, scariness of it all. I have a baby girl with Turner's who is now 18 months old. I found at at 7 weeks pregnant that she had a cystic hygroma. We had to wait until I was 18 weeks before an amnio confirmed Turner's. An fetal echo followed at 22 weeks and we found that she had a coarctation of the aorta, which means she had narrowing of the aorta. We were told that typically, Turner's pregnancies do not make it past 24 weeks and we held our breath until she was born. We were also told 94 % of Turner's pregnancies never make it to term.. but here she is 18 months later. She was born at 39 weeks at 6lbs. 8oz. and she had edema all over her body for the first 24 hours, but it went away. She still has some puffy feet and she has what they call a "funnel chest" where the sternum is sunken in, but it will never cause her problems. She looks completely normal and amazingly beautiful. She's a very smart girl, in fact more advanced than my middle child was at this age. The cystic hygroma resolved about 36 weeks into the pregnancy, but she was born with excess skin on the back of her neck, which in turn can cause webbing and it has started to show. There is a surgery she can have to release it and it is not causing her any problems as of yet. She had a coarc repair, where they took out the piece of her heart that was narrowed, at 5 days old and went home 2 weeks later. She has since been cleared from cardiology and only sees them once a year. She is actually on the tall side of Turner's and in the 90th percentile on the Turner's growth chart. She had some upper body low muscle town, including her mouth, and she has been in occupational therapy for a year once a week. It has done wonders. She walked at 14 months and is very strong. Our only fallback right now is that because her vocal chords have not grown together like they should be, her windpipe is soft and therefore she aspirates thin liquids. We have thickened her formula and mild, but now after a year, we have to resort to put in a feeding tube in her stomach until she grows out of this, if she does. It is very heartbreaking to have to do this, to have to take away her cup that she is attached to.. but have to give her lungs a break. I hope this can give you some relief.. I only wish I had someone to talk to when I was pregnant with her and remember that NO pregnancy, normal or not, is guaranteed. I was certain that I would not have a baby shower b/c I did not want the heartache of taking things back, but a friend reminded me... no pregnancy is guaranteed. We were very, very blessed that her Turner's was not severe. I only hope and pray that you experience the same thing. It is a very hard road in the beginning and the first six months or so seem to be a blur and fly by quickly. I told myself over and over again that I was not a strong person.. that I didn't think I could do this, but you take what has been given to you and you find strength from somewhere deep within. All my prayers and blessings to you and your family and if you would like to talk more or ask questions, please don't hesitate to ask.



Jennifer

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