Ok, I'm back. Now, to answer your other questions.
First, let me reiterate, in no way is the port is a necessity. She will not die without one. The only reason why I even had a port was because I was tired of getting stuck so many times, and I only first got it when I was 18 years old. It caused numerous problems, and I have not had a port for a few years now, and will never get one put back in. I'd rather get stuck a bunch of times then to go through what those ports caused me. Do NOT let anyone make you think that Lauryn needs to get one.
She can basically get transfused anywhere in her body, as long as the vein is strong enough to withstand the transfusion. When I was a little baby, they use to put the IV in my foot, because they couldn't find veins on me. Yes, they can put an IV in the scalp. It's kinda hard to find decent veins on a baby, but a good nurse will get it, regardless.
As for bone marrow transplant, a sibling has a much better chance of being a match if the child is from both the same parents. If you are interested in a bone marrow transplant, Lauryn can be put on a list and they will contact you if they find someone who they feel is a perfect match, so you do not need to have another child to match up with her.
I know that you feel grossed out by the fact that strangers are giving your child blood, but you need to think of it as genuine people giving the gift of life and love to Lauryn. If you feel that strongly about it, try to find out if there is a way for your own family and friends to donate to her. That is what I used to do when I was capable of having that. I cannot do that anymore, because my new hospital doesn't have its own blood bank, and it would cost me tons of money to have the blood taken from them at a different facility and sent to my hospital. You may have that option, though. It makes things a little easier to cope with if you are feeling uneasy about strangers giving blood to her. Honestly, the blood banks are much safer now then they were years ago, and there's a slim chance of Lauryn contracting anything. Most of us having been getting blood for 30+ years and have been fine. It will take some getting used to, but it will be ok. So, to answer your other question, yes, you can have your family and friends donate to Lauryn, if the hospital participates in that.
The most that I've ever heard of majors going without blood is a month. There are some that go longer, but they are usually functioning at a very low hemoglobin. Lauryn will not need as much blood as a baby as she will when she gets older. So, she may not have to go often right now, but it will get to a point where she will need more blood. The time frame for blood transfusions is usually 2 to 3 weeks, but some can last longer.
When Lauryn starts her transfusions, you will definitely see a difference in her skin color and habits. She will act more like a healthy baby would. And yes, there is a big difference between functioning at a 7 or 8 hemoglobin as opposed to a 10. It may not seem like a big difference in numbers, but the person will function much better.
If the blood is not filtered from the blood bank, they will use a filter during the actual transfusion. Usually, the blood is filtered at the blood bank, and sometimes they use an extra filter during the transfusion process. Ask the nurses what their protocol is. Lauryn should only be getting packed RBCs and nothing else. She does not need white cells, platelets, etc. The transfusion should be packed red blood cells only.
I'm confused as to why you want a DNA test. If Lauryn has Thal Major, then she will need to be transfused regardless. I know it's a hard thing to accept, and you want to spare your baby the pain of going through all this, but I promise you that as long as Lauryn gets the care that she needs, she will go through life accomplishing everything that a healthy person would. There may be some setbacks along the way, but that can happen with anyone. Unfortunately, we cannot change what life throws at us, we can only fight back and prove that it will not stop us from living our lives. Just take a look at us Thals on this forum. There are many of us in our 30's like me, and 40's and so on, and we have been able to accomplish things that even many healthy people do not accomplish. I think we just have an amazing inner strength that keeps us going, and makes us want to prove that we can do anything that we want. It took a lot of hard work and dedication for me to get through nursing school, but I did it. Many of us have done things like this, and continue to do so. Keep your faith. Lauryn was put here for a reason, and with good care, she will prove that no one will stop her from being whatever she wants to be.
As for trying to buy time, I wouldn't recommend that. If Lauryn's hemoglobin keeps dropping, she will just become weaker and prone to sickness. If you keep her at a decent hemoglobin, she will function much better. Your doctor is right about not wanting to wait, because the more her bone marrow works to try and make cells, there will be risk for bone/growth deformities and other issues.
As for gene therapy trials, I would wait until they become more proficient. Having Lauryn go through the treatment that we know works best is her best bet. We are all on our toes, waiting for this gene therapy to pan out, but in the meantime, it's best that we keep up with the protocol that we know is working at this time.
The lasting effects of transfusion is different with everyone, so the only way you will know is trial and error. When she gets her first transfusion, you will find out with her next blood test how long it's lasting. Also, each transfusion is different, because of the amount of hemoglobin in each bag. She may get a really good bag and last longer, but then get a bag with less hemoglobin and need to go back sooner. Once you get used to things, you will be able to just look at her and tell that she needs a transfusion, and when she gets older, she will be able to do the same.
Blood transfusions are much safer now, and they do a lot of screening for communicable diseases. People have to go through a whole history form, their blood is tested for the major diseases, and they also do not allow people to even donate blood if they don't meet the requirement. For instance, if someone has gotten a tattoo or piercing, they cannot donate blood until a year after. There are other requirements as well. I have gotten thousands of blood transfusions in my 30 years and have not contracted anything. The bulk of the Thals who have contracted something, were given the infected blood back in the 80's, when testing wasn't that great.
Your family's life is not doomed, Chrissy. It will be ok. Every mom is scared of their child dying, whether they are healthy or not, so you have every right to feel that way, especially with Lauryn having Thalassemia. As I had said, though, we are all living much longer now. It's rare for a person with Thalassemia, who is given meticulous care, to die at a young age these days. Care is the key. If she gets her transfusions and uses her iron chelator, she has the ability to live a fairly normal life. The only reason why I say "fairly" is because normal, healthy people do not have to get transfusions and use an iron chelator.
I just want you to know that you have an excellent support network here, and we are all here to help each other. Please do not feel bad for asking questions or venting to us. That's what Lisa created this support group for. You have this place 24 hours a day, 7 days a week, so use it as much as possible. You will find more experts here than anywhere else. Sometimes we can even be smarter than the doctors themselves.
I hope this information helped in some way. I wish that I could hug you and tell you that everything is going to be ok, but as a mom, you will always worry no matter what. Just trust that things will get easier as you get used to the process. It will always hurt you, but it will be easier to deal with once you go through it and see your child growing like any other child. Just remember, it may seem like the best thing to postpone transfusion as long as possible, because you don't want to see your baby go through it, but keeping her at a level of at least 10 is the best possible thing to do. It may not be easy to deal with the frequent transfusions, but it will be much better for Lauryn in the long run. She will feel much better, and function much better.
We are here if you need us.
