A few months ago my Niece (N) had to have an emergency c-section after she felt like her baby (B) wasn't moving enough. (I think it was at around 36 weeks). When she went in for an ultrasound to check on B, they found that N's placenta wasn't working right, and that B was just hanging on to life. They were able to save B's life, but they knew that she had been oxygen starved for some time. B seemed to do well for about a few days, then started to react to the formula the doctors were giving her. (B didn't have a suck reflex, and I know N wanted to breast feed, but I'm not sure that she was given all of the support she needed, or if it just wasn't possible for her to pump for B enough to establish a supply). Eventually they were able to find a formula that B was able to "tolerate" enough, and she finally started to gain weight, and stop constantly crying from being in pain.
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B started to gain some weight, and they were able to give her a bottle. The day before she was to be discharged, it was discovered that she had an infection in her GI tract and they had to transfer her to Children's since there was a risk of her GI tract rupturing. She survived the procedure, and was in the hospital for a few more weeks, and eventually brought back to the local hospital, and then finally she was able to go home at around 5 weeks old.Â
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Although physically B has been developing well, it's become apparent that she is not mentally where she should be, and after blood work was done, it was determined that she has several chromosomal abnormalities. They think that she has a very good chance of having Autism. They are drawing my Niece and Nephew's blood to see if there are any genetic abnormalities coming from them, and to see if they would help predict what other issues may come up for B. They are also trying to determine how much damage was done stemming from lack of oxygen while she was in utero.Â
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My Niece and Nephew are beside themselves. They were so happy to be pregnant with this baby after they lost their first in the beginning of 2010. N was so scared her entire pregnancy that she was going to loose this one too, and when she almost did....They are so happy that they finally have their child, but it has been so hard for them taking care of B. They had moved in with my SIL to save money when N was pregnant the first time, and their entire savings went toward commuting back and forth to Boston to be with B while she was in Children's. B is still only *tolerating* the formula, and feeding B is difficult. (N is devastated about not BFing since not only do they miss out on that bonding time, but feeding B is always a battle). B is always uncomfortable and usually fussy. (the docs said that donated breast milk wouldn't be tolerated any better than the predigested formula B is on now). She does not yet interact with people, despite being nearly five months old. They are so good with B and I know that they have a lot of support from local family, but I can just see how burnt out they are. On top of everything else, B isn't gaining the weight that she should be. They are considering putting in a feeding tube if things don't pick up soon.
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I feel like even though N and N are kind of private people, they would really benefit from interacting with people who have had a similar experience. Someone to give them some kind of idea of what types of things may be in their future for B - challenges and triumphs alike. Someone else to relate to the unique issues that they are experiencing. We are a very young family, and we all have young children and babies, and I feel like although they appreciate a lot of the advice we have to share, I feel like sometimes it's hard to translate into their situation. ( I don't know if I'm phrasing that the right way).Â
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Anyway, does anyone know of any support networks? Anyone else been there who would want to start something? N isn't much into social media, and I think may prefer person to person interaction...although, maybe N or N would be open to email for this type of thing....
