Positive on Newborn Screen

Dear V.,

I'm so sorry to hear what you are going through right now. It's devestating to think that something could be wrong with your child and have to wait for the test results to give you answers, one way or another. The unknowing is difficult.

Our daughter is perfectly healthy but there was a time we didn't know if she would be or not. First, the series of pregnancy tests they do ~ one of them showed a false positive for downs syndrome (something very common with that test). My doctor did so many ultrasounds that I began to wonder if she would glow when she was born. (I kid.) Next, there was some tissue that showed up in utero that concerned my doctor. He was afraid that it would attach itself to my daughter's hand or foot and cause a defect. Thankfully, it didn't and eventually it disolved. Finally, I had complications and ended up having to deliver her a month early. She had severe reflux and one of her organs wasn't devolped completely and we nearly went home without her. Our daughter never left the NICU until the day we drove home. She was only in my room for 20 minutes before we left the hospital. Needless to say, my whole pregnancy was filled with questions and worries and I think it prepared me for the future, for the unknown.

I wish I could tell you I've got the answers to your questions but unfortunately I don't. The only thing that got me through each of those possible "worst-case scenarios" was my faith and the love and support of everyone around me. My husband and I knew that no matter what happened we would love our daughter just the way she was/is and for however long we had/have her in our lives. Still, waiting for answers was gut wrenching. I worried, said a lot of prayers, and fretted over everything. I remember when peace finally settled in my heart and can only attribute it to God. One minute I was a wreck and the next I knew everything would be okay. It was that sudden.

You have to do your best to relax and give this all up to God. Surround yourself with friends and family whom you can talk to and share your fears and concerns with. But most of all, snuggle up to your precious daughter and love her. No matter what the future holds, your children can be one of the greatest sources of comfort and joy in your life. Enjoy this time as much as you can. Don't let the threat
of "possibilities" loom over you and rob you of some very precious moments.

Do whatever you need to process this time. For me, I journaled and read things that helped me escape from myself for a little while. If talking to a friend is what normally helps then call one up. Read, journal, listen to music, take a walk, just do whatever helps you. Before you know it, time will have passed and you'll have the test results. THEN, you can deal with whatever it is you need to deal with.

I'm sorry that I don't have anything real answers for you. I will be praying for you and your family though. Hang in there and don't give up hope. Try to rest in God and know that whatever the outcome He'll help you through it.

Praying for you and yours,
K.

Pray and believe that your daughter is healthy. Thanking God for the gift He has given you. Don't let the enemy still your joy. You have a New Little Wonderful Gift, Your Daughter.
Hope you don't mind me praying for peace for you.
D.

I went through the same thing with my daughter, her newborn screen showed positive for Cystic Fibrosis. My daughter didn't show any of the major symptoms of CF so while we were waiting on the results from further testing I just held on to that. I wish I could tell you something more helpful than that, I hope that you get the results soon so that you don't have to worry any longer.

Hello: I can say that I feel for you and have been there. At 13 months, we were told our son had CF and then after further testing didn't have CF but then were told of all these other "bad" diseases his symptoms could reflect and went through even more and more testing and even exploratory surgery. In the end they couldn't come up with a definative cause of his symptoms and we are still dealing with the problems but have decided to stop the "torture" testing for a while to see if diet, over the counter meds, and just allowing time for his internal organs to grow to see if that alleviates some of the problems. All I can say is that there are false positives and that it's natural to be stressed and worried. I got through it by sharing the worry with my husband and turning to my faith for strength.

Hi I went through the same thing. My son was born a month early and before I could really see him they took him off to the NICU. Liquid in the lungs, breathing problems....anyways they did that test and it came back positive for CAH (congenital adrenal Hyperplasia). My son stayed in the NICU for 8 days and they repeated the test and also did some blood work. The blood work came back okay...I felt the same way...waiting and worrying and hoping that everything would be ok...well it was...my doctor told me from the beginning..."no news is good news"...the test came back just fine...false positive...it happens. Don't stress so much your baby needs you right now enjoy her and never let your faith down. She will be just fine. She is in our prayers...I hope this has helped even a little bit.

Pray, Pray, Pray for comfort during the waiting. Also know that whatever the outcome, God has picked you to be the Mother of these children for a reason. They are to be your greatest joy and your greatest challenge, but you are obviously strong enough to handle whatever you are destined for. Just keep loving them and being their Mother...that will never change no matter what some silly test results say. Blessings to you all!

I did not get a call like you did or anything like it. But all I can advise is to have faith in God and pray. He will aswer your prayers. He does not want any of his children to be unhappy and to suffer. Just believe in him and trust that he will take care of whatever it is that he needs to take care. Pray for your daughter in Jesus precious name and you will see how miracles do come true. A big hug goes out to you and I will pray for your daughter. Everything will be fine. You will see!!!!! S.

Prayer can do a lot to ease fears like this - it worked for me when I was waiting for test results in the past and somehow I knew people were praying for me and the fear just seemed to "lift" and I felt peace with whatever the results would be (like I took a Tylenol for the fear - it was there but it did not hurt so much anymore). Hopefully you will experience this also and the wait isn't too long.

Just try to think about how GOOD you are going to feel when you get the all clear that all is well - I'm sure it will help you appreciate your child even more!

I'm sending up a prayer for you right now!

The only way I can get through a tough waiting time is lots of prayer. God will help you have peace.
God Bless You D.

I have!! When my son was just a couple weeks old we got the same call. Of coarse I was upset. He hadn't been having any signs of it either. But I had to stop nursing my baby and immediately put him on soy formula, while meanwhile pumping every few hours. It ended up being a false result and he was fine and I had a freezer full of milk. I wish I could tell you something that would make the waiting easier but it is scary. Just know that galactosemia is very rare and the odds are very much in your favor that it's a false result, especially if she is not showing any signs of it. Hang in there. I'll say a prayer for her & for you. :)

Dear V.,

I do not know what it is but I did have 2 beautiful daughters and I can feel your pain. My best advice is to pray hard & get a prayer chain going. My cousin was born with a hole in
his heart & was told he wouldn't make it through the night.
They had the Elders of the church come in & pray over him all
night & the next morning the doctor couldn't explain it but he
was fine & the hole was gone. We knew why. He is now 44 years old with 2 boys of his own. Prayer does work. I will
say a prayer for you too. God bless!

C.

Pray, pray, then pray some more. Good luck.

Hi V. -

Let this challenge that greatness that all mother's have - intuition. You know your baby. What do you sense about this - go with that. I think she is fine. Believe in that and get on with your life. We have dealt before with this sort of thing with two of our children and all was fine - keep positive in your heart and love her and live your life!

Alli

Last year when my daughter was born she tested borderline positive for a condition called MMA. First week appointment was devastating. I had never felt so scared and helpless in my life. I will warn you that the testing went on for 6 weeks for us, even meeting with a specialist for metabolic diseases from Houston. This 6weeks was the hardest thing I had ever faced. In the end, it was a false positive. What a relief, but we went through hell. I do understand that the perameters have to be big to catch a child who truly does have these disorders, unfortunately there are many families who suffer that waiting period when there child is perfectly fine. I really don't have much advice, but I can completely understand how you are feeling. I wish I could give you a big hug. I know how scarey it is. You feel as though you would give up anything just to hear they are ok. Also, I realized how much I took for granted with my 4yr old, that you are just entitled to a healthy baby. For some it doesn't work that way. I really am sending all my good thoughts your way that you can get through this time and fortunately because of these screenings even if it is positive there are early interventions for a lot of these disorders/diseases. Good luck..stay strong.

This is where faith comes in. You can handle whatever the outcome is. For now just enjoy your newborn baby daughter and when you find out that she is perfectly healthy, you won't regret wasting time worring about something you can't control anyway. You can control the time, love and positive energy you give her, put all you energy there and let God take care of the rest.
Blessings,
D.

Please be assured everything will be alright.You must stay prayerful no matter how long it takes for the results to come back.sometimes if the infant is only a few days old and you are breasting feeding or the infant isn't eating well the test will be off but there is an additional test that is don at 2weeks of life that will show a different result. it takes sometimes 6 weeks to hear from the state. Please be assured everything will work out

Ok, here goes. I have not actually experienced what you are going through, however, I am an OB/L&D/Nsy nurse, and here is the info I have for you. The test that your baby had was called a PKU, and tests for many different disorders, state mandadted, and are at times seen to have false positives. For that reason, your baby has this exact test redone at 1-2 wks of age, just to ensure correct readings. Very stressful, I know, waiting for the workup to come back, and you are going crazy in your mind, just be very careful for now to excluse any dairy and lactose from your baby's diet until you know for sure. Research as much online as possible concerning galactosemia, and closely follow your physician's instructions. Hope that I helped, and I will pray that your child's abnormal reading was caused by a hemolyzed specimen.