Nursing Care Plan for Trisomy 18

roser13, ASN, RN · Mar 8, 2010

What ideas do you have so far for the care plan? If you tell us what you've thought of so far, maybe some of us can help you expand those ideas.

TiffyRN, BSN, PhD · Mar 8, 2010

I think you need to decide what approach you are intending. Most families choose palliative care only for these infants, with the degree of medical intervention varying from none at all to only supportive to full resuscitative & surgical interventions. I'm sure most of the nursing diagnoses will be the same regardless, just the interventions would vary depending on how aggressive each family chooses to be.

The biggest issues for the neonate are oxygenation (complicated by central apnea & often heart defects) & feeding (few of these infants can bottle feed & some have GI malformations). Another huge issue is family coping because as you noted few of these infants are expected to survive for long.

martamcclanahan · Mar 8, 2010

Hi All -
I am currently taking a pediatric class and have a presentation on a childhood illness. I have chosen to do trisomy 18 / Edwards Syndrome since it's a topic that we didn't cover in class and thought it would be something different. I watched that youtube video 99 balloons and wanted to show that to my class. The only part that I am having problems with is coming up with a nursing care plan. I have read that survival rate for these babies are not that good since most of them don't live pass their first birthday.
I would appreciate any ideas that you may have.
Thank you! :)

Hello im a mother of a almost 9 year old son named kayden who has trisomy 18. I found your writting through another mother who happend to read this. On my face book i have a ton of trisomy 18 mommies.Trisomy 18 does not always mean death and we would love to share our stories with you and photos as well. We think this would be a wonderful opportunity to share with you so you can then share with others as well. please contact me at [email protected]

Barb Farlow · Mar 9, 2010

It is a great myth that conditions such as Trisomy 13 and 18 are universally lethal. Several years ago, leading MD/EThicists hit the nail on the head with this publication http://livingwithtrisomy13.org/Koogleretal.pdf suggesting that physicians often will use language of medical futility regarding the infant when they are in fact imposing a quality of life judgement on the child.

It is true that many infants born with these conditions are tragically afflicted and palliative care might be the best option but they all all different.

The video 99 Balloons is a beautiful video of the choice to let nature take its course. Other choose more aggressive care. Studies show a 91% success rate in cardiac surgery for these children.

Here is a video about a little girl whose parents chose aggressive care for their baby. This will give you a chance to see how special the child's life was

In recent years, the American Academy of Pediatrics has recommended that infants with confirmed trisomy 13 or 18 should not be resuscitated at birth. This is very tragic because even for the little ones who do not live long, that time is immensely important to the families and leaves a lifelong impact.

Good luck with your project!

Tanyatyler · Mar 9, 2010

My daugther was born September of last year and lived for 20 days. She spent 15 days in NICU and 5 days at home. We had a care plan for her - she was on oxygen and used a feeding tube for milk (had to mix a high calorie formula to help her gain weight). In any event, I would love to answer any questions you have.

[email protected]

Tanyatyler · Mar 9, 2010

Barb, regarding you comment about drs being advised to not resusitate is one of the reasons we refused to have test to confirm her condition. Our baby did need help breathing at birth. I think I am way better off being that I got to spend some time with her.

TiffyRN, BSN, PhD · Mar 9, 2010

I am not up on the current list of nursing dianoses; as you know, that sort of thing becomes extinct once you enter usual bedside nursing practice. Though one instinctively uses them. I found a list of Nanda diagnoses and picked these out. Some of these are brought to mind from a couple of times I cared for infants with T18.

Activity Intolerance

Decreased cardiac output (for those with heart issues)

Altered tissue perfusion; specifically cardiopulmonary

Ineffective family coping

Anticipatory grieving

Ineffective airway clearance

Risk for Aspiration

Ineffective breathing pattern

Ineffective thermoregulation

Risk for infection

Ineffective breastfeeding

Ineffective infant feeding pattern

Altered nutrition: less than body requirements

Impaired swallowing

Disorganized infant behavior

Risk for altered parent/infant attachment

Altered growth and development

Knowledge deficit

Interventions will depend on the family & medical team's decision on the aggressiveness of the medical intervention. I feel for all families that are affected by this diagnosis. I understand families making different treatment plan decisions. As a nurse, I support them, inform and educate. I was deeply touched by the love I saw the last time I cared for an infant with this diagnosis. All of us worked very hard to teach the family to provide the oxygen and feeding this little girl needed so she could go home.

alalimarmo · Mar 9, 2010

Wow....that was my first post and the responses were amazing! !!! Thank you all for your help!

Marta and Tanya - i will send you a separate email by tomorrow the latest! i am in my last few weeks of LVN school and have an exam tomorrow! I am looking forward to learning more!

rachelgeorgina · Mar 9, 2010

I nursed an eight-year-old with this condition once. She was just beautiful.