NAIT baby & subsequent pregnancies

[tessack]

I have a 8 month old healthy baby that was born with NAIT. It was a very difficult first few weeks. HE was born with an 8 count, and had about 15 transfusions before his levels stayed consistent. Our OB recommended NO more children, or to use a surrogate, or sperm donor. We are not opposed to these however if possible I would like to of course carry my child. I know there are families that have gone on to have more healthy children. We are located in Massachusetts. Does anyone have any DR recommendations that are experienced in dealing with NAIT. I love my current OB, but want to get a second opinion.
Thanks for any help!  


This discussion is related to Neonatal Alloimmune thrombocytopenia (NAIT).

[Louie71]

Hi
I wondered if you could help me locate a 'nait' aware doctor I live in UK, near Bristol?
Many Thanks
Lou

[jackamol]

Sorry it hid my email stacy (at)naitbabies.org or go to www.naitbabies . Org

[jackamol]

Hi congrats on birth of your son and sorry you have joined the nait ranks!,, but please do not listen to your dr about not having another child that is not true, it is possible with treatment,  I help run a non profit organisation set up to support & inform nait parents. Www.naitbabies.org.  We have a few groups on Facebook that have members from all over the world and I'm sure one of these ladies will know a brilliant nait aware dr near you. Quite a few mums were told like you not to have more but luckily they sought help and have gone on to have perfectly healthy normal babies and some more than once!,, do not despair sometimes it can take a few months for the platelets to be be able to sustain  themselves I actually know personally of a couple that are still undergoing treatment 3 mths down the line.. Nait can be scary but learning as much as you can and empowering yourself takes a lot of the worry away.  If you would like a chat or advice please message me at ***@****

[KentW]

First let me congratulate you on the birth of your son, and I am so happy he is doing great and did not suffer a bleed.  As you probably know, the good part about NAIT is that if you avoid a bleed, there are no lasting affects of the disease in the child once the maternal anti-platelet antiboides die off in a matter of days or weeks.

I am a parent of 3 health NAIT babies, and while we have 100% chance of NAIT in our children and experienced a severely low 20k count in our first-born son, our daughters both achieved completely normal platelet counts at birth.  I have been active in reading about NAIT for over a decade and know hundreds of other NAIT parents, many who have went on to have more children, some as many as five or more.  If treated early, aggressively and non-invasively, NAIT is highly treatable.  While NAIT does carry serious risks, especially if untreated, and I am sure your doctor means well, our doctors and many, many others would disagree that you should not have more children just because of NAIT.

Our doctor felt if his treatment plan was used that nearly 100% could achieve a birth count above 50k.  Even the older treatment methods that some doctors still consider "standard" that unwisely wait until half-way throught the pregnancy (20 weeks) to start treating NAIT achieve counts above 50k about 80% of the time and generally avoid a bleed over 95% of the time.  I obviously prefer the approach of erroring more on the side of caution, and have spent years helping other NAIT parents receive safer NAIT treatment and care.  I have over a decade's worth of NAIT information I am happy to share.  I started a website at www.naitparent.com that has a good deal of information, and if you use the contact us page on that site, I would be happy to try to share doctors of  other NAIT parents I know in MA.  You can also email me at kent(at)naitparent.com.

I am curious if your doctor treated your son with IVIG (intravenous immunoglobulins) or not as I generally do not hear of babies need that many transfusions.  A couple doses of IVIG generally provide lasting protection for the platelets and in are what should have been used if going "by the book" or at least by the Pediatric Hematolgy Clincal Handbook I own.  It could just be that your son had a persistent case, but if not, it's just another reason to seek out someone who is more effective at treating NAIT.

Please know there is much hope!  The treatments are somewhat involved and time consuming as well as can cause some fatigue and headaches the day of the infusions, but I don't know anyone who later felt they were not worth it.  The main thing is that they do work, and not surprisingly, they tend to work better if used earlier in the disease.  Why some old "experts" stubbornly refuse to get this basic concept is disappointing, I find a good deal of doctors "get it" and are happy to treat NAIT earlier.

I look foward to hearing from you and am happy to provide information, answer questions and support as are many others who help me.

Kind Regards,
Kent
www.naitparent.com
kent(at)naitparent.com