Heartbroken and Not Sure What To Do

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  • JJPlaycare
    Daycare.com Member
    • Apr 2010
    • 292

    Heartbroken and Not Sure What To Do

    I need some advice/guidance/someone to calm me/tell me Im nuts/ I don't know - a list of a few things going through my head! This is the story in brief. So I have been caring for a family for the past 3 years. They were due to have a baby in December and then have 6 weeks maternity leave! So the baby would join its brother in daycare in January. Well the baby was born with very long fingers and toes, they thought he had extra cartilage and they were referred to a specialst in which took a couple weeks to get into to. Took him to the doctor who concluded that was not what was going on and reffered them to a different specialist. They saw this specialist the day before she had to return back to work. On his first day of daycare at drop off she informed me that they got bad news at his doctor appointment. He has a heart defect and a possible underlying syndrome. His aorta is stretched to two times the size that it should be and they are treating him with meds. He is the youngest child they have treated and the medication has only been out for 5 years. His condition is called aortic root enlargement. They have to take him back in in a few weeks to see if the dosage/medication is working. Also the underlying syndrome wont be figured out for 4-6 more weeks after they get the results back for the genetic testing. : ( I am completely heart broken for this family. I have been a complete basket case over all of this. I am having mixed emotions and have been on a complete rollercoaster, I can't even imagine what the mother, father and family is going through. I don't know what to do. I feel heartbroken and want to help, but at the same time I feel like this was completely dumped on me and I REALLY have my hands full as I am starting another infant mid Feb, have a 1 year old of my own with a total of 11 children I care for. I am completely nervous to care for him, I feel horrible for saying this, but its the truth! : ( I feel like right now it is a waiting game to see how everything unfolds, as far as whether his meds are doing the job, what the syndrome is going to entale.... AND currently they have been in the hospital for the past week and a half with RSV! : ( I really need some support and some help. I am just a mess over this and don't know if I am comming or going, please help.
  • Springdaze
    Daycare.com Member
    • Jun 2011
    • 533

    #2
    Poor little one! I would have to tell them that I wasnt qualified to watch a child with those conditions. I would think he would need to be watched my a nurse, especially because he's so young.

    Comment

    • mickey2
      Advanced Daycare.com Member
      • Dec 2010
      • 334

      #3
      Wow this is so sad. It must be so difficult for you. Having had this family for so long you get attached and grow to love them. I can understand the emotions you must be going through wanting to help however with so many issues this little guy needs special care.

      So sorry for you and this family.

      Comment

      • Daycaremomof2
        Daycare.com Member
        • Oct 2011
        • 101

        #4
        Originally posted by chellenj
        Poor little one! I would have to tell them that I wasnt qualified to watch a child with those conditions. I would think he would need to be watched my a nurse, especially because he's so young.
        I would have to agree. That is too large of a ratio to be caring for a child who will need special attention- any child with any type of condition needs someone who will have their eyes on them every second of the day. It is sad, but it is too much liability for you. You have to look out for yourself and your own family first.

        Comment

        • Ariana
          Advanced Daycare.com Member
          • Jun 2011
          • 8969

          #5
          Are they wanting you to take care of him right away or will they wait until he's more stable? I think if it were me I would try not to worry too much until his condition is more stable. Research as much as I could about the condition so I know what to expect and take it one day at a time. Sometimes things like this are no big deal once the child is stable and taking to meds appropriately. He may or may not need special care and at this point no one really knows.

          Keeping the lines of communication open with the parents is a good way to assess the situation and perhaps getting some counselling if it's affecting you deeply.

          Comment

          • permanentvacation
            Advanced Daycare.com Member
            • Jun 2011
            • 2461

            #6
            If you don't feel comfortable watching the child, you need to let them know that. You might want to suggest that they find someone with less children in their care so they can focus more on their child with the special needs. There are a handfull of daycare providers who had been in the nursing field before going into daycare. The parents might be able to find someone with a nursing background in which that person would be better qualified to care for this particular child.

            Comment

            • Mary Poppins
              Daycare.com Member
              • Jan 2012
              • 403

              #7


              How scary for the parents and for you!

              I would be very uncomfortable giving care to him, too. So many "what if's"! I would just be honest with them though and tell them once he is fully stable with a note from the doctor you'd love to have him back. Unless of course this falls under discrimination which I'm not entirely sure of. :confused:

              Perhaps some of our wiser members can weigh in on that...

              Comment

              • Ariana
                Advanced Daycare.com Member
                • Jun 2011
                • 8969

                #8
                This might be the syndrome he has:

                Comment

                • JJPlaycare
                  Daycare.com Member
                  • Apr 2010
                  • 292

                  #9
                  Marfan syndrome is one of the many genetic syndromes they are testing for, but definately at the top of the list due to the heart defect he has which goes along with Marfan syndrome. I have googled and researched a ton, but it is difficult with this type of heart defect and if indeed it is Marfan, most people don't catch it until later on in life, so everything I am finding is nothing related to infants.

                  Comment

                  • Sugar Magnolia
                    Blossoms Blooming
                    • Apr 2011
                    • 2647

                    #10
                    Ariana is correct. It sure is Marfans, ib have this syndrome as well. It can be mild to severe. I am very tall, have very long fingers, my arm span is 2 inches longer than my height. I also have heart issues in the form of a mitral valve prolapse. My aorta is mildly distended. It is usually worse in males. It is genetic. My father had it and died at the age of 29. I am 43. I may need a valve replaced, I see a cardiologist yearly . This syndrome is only a death sentence when it is undetected. I hope this baby will be ok. Take a deep breath and try to relax.

                    Comment

                    • Countrygal
                      Advanced Daycare.com Member
                      • Aug 2011
                      • 976

                      #11
                      I am so sorry for everything you and the family are and will be going through! My prayers and thoughts are with you during this!

                      Comment

                      • JJPlaycare
                        Daycare.com Member
                        • Apr 2010
                        • 292

                        #12
                        Sugar Magnolia,
                        I would LOVE to talk to you more about this. I am trying to figure out if daycare is the best decision for this child and if he will be ok here. I do know that earlier you detect it the better. I am pretty sure he has it severe, but that is my guess looking at the many symptoms he has. The geneticist said that yep he can come to daycare, but for my assurance and my sanity I need to know that is a good decision and doesn't put me in a very risky situation. Please help and share any info you can regarding this.....

                        Comment

                        • Sugar Magnolia
                          Blossoms Blooming
                          • Apr 2011
                          • 2647

                          #13
                          J J : this baby sounds like a severe case. I did not know I had it until I was 8. I was freakishly task tall and skinny, but it did not effect my life too much. I am also hard of hearing but that may or may not be related to marfans. It can limit him later in life with sports and other activities. The aorta is the BIG concern. If they caught it this early, it is likely pretty severe. I think he will not need special care, but it does seem like you have a lot of kids. Do you have anassistant? You can pm me if you want to talk more. The only real problem I had as a child was teasing. I was on ski team and I did everything I wanted to. But I have a mild case. I wouldn't say "its nothing", because after all, I do have a dead father. He did not know he had it and he was in San Francisco from 1968 until his death in 72, so they believe somelifestyle choices may have contributed. (yes , I mean drugs). This baby should be ok.

                          Comment

                          • nannyde
                            All powerful, all knowing daycare whisperer
                            • Mar 2010
                            • 7320

                            #14
                            Originally posted by JJPlaycare
                            The geneticist said that yep he can come to daycare, but for my assurance and my sanity I need to know that is a good decision and doesn't put me in a very risky situation. Please help and share any info you can regarding this.....
                            Did you get that in writing from the geneticist or is the parent saying he said that?

                            You may be in the middle of a deal where the geneticist is thinking that the infants risk isn't different in child care than in parental care BUT that doesn't mean that the infant doesn't pose a risk to you if you do not properly care/supervise to the level HE needs. It may not increase the infants risk but it sure may increase your liability.

                            Methinks this was either a quick comment to them in passing or not well thought out from YOUR prospective.
                            http://www.amazon.com/Daycare-Whispe...=doing+daycare

                            Comment

                            • MarinaVanessa
                              Family Childcare Home
                              • Jan 2010
                              • 7211

                              #15
                              Originally posted by nannyde

                              Methinks this was either a quick comment to them in passing or not well thought out from YOUR prospective.
                              I have to agree here. Who knows? Maybe I'm wrong however I would want a note from the doctor as to how the child is to be cared for properly and I know I'd like the physician to know the child:adult ratio in my DC.

                              I'd want to know specifics of what possible complications and scenarios the child could encounter while at home and what the protocol is if something bad were to happen. Then think about all of that and add 11 other kids to the mix. Only then can you make and informed and educated decision as to whether or not you are up for the job.

                              If you decide to take the child on I'd make copies of the physician's note and information that he gives you and (if you're licensed or registered) I'd send those along with a written note from the parent which says in their own words that they understand everything that the doctor said (including any medical emergencies that you can be faced with) and send them to licensing. Keep the originals in the child's fiile and update is as the parents find out more. This is so that if something does happen (knock on wood that nothing does) at least you are covered and the parents can't say that it was because of something you did or failed to do.

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