HLHS ~ Natalia

My daughter Natalia Tatianna lived for 29 days.  She had HLHS or Hypoplastic Left Heart Syndrome.  The defect was found 1 day before she died.  When she was born she was blue then became very dusky, never peaches and cream like her sister who was 1 1/2 years at the time.  The doctors said she was a bit yellow/jauntisted but that she would be fine.  They listened to her heart and said she had a mummur which kinda ran in her father’s family so that was basically poo-pooed too. 

I never had an ultrasound when I was pregnant with her because we had no health insurance at the time and my 1st child was healthy so I guess it was assumed that this one would be too. 

Natalia never slept or ate well during her short little life.  She couldn’t nurse, now I know she was gasping for every breath. 

Finally after having all my wories about her ignored we took her to the emergancy room because she kept turning bluer and bluer.  We still had no insurance so we sat in the waiting room for 2 hours with our at that time dying daughter.  Finally she was seen and x-rayed.  They thought since I have asthma (that started when I was 12, not birth) she had some lung problem also, hense the blue.  On the X-ray they saw that me beautiful wee baby had only 1/2 a heart.  They told us she had heart disease and that she was being sent to the Children’s hospital 45 minutes away.  I was not allowed to ride with my baby. We tried to keep up with the ambulance but were unable to.  We became horribly lost in that part of Minneapolis. 

By the time we finally got there my sweet baby was having her stomach drained, was having a blood transfusion and was drugged into unconsiousness.  I never saw my baby’s beautiful brown eyes again.  The doctors gave us 2 choices…let my baby just die, or have a surgery that at the time had a 10% chance of saving her.  No mention of a heart transplant that would have surely bought her enough time to strengthen and maybe survive.  She had the Norwood procedure the next day.  2 hours after the surgery she died.  I hugged my sweet tiny warm baby for the last time.  The autopsy said the surgery was a success…um…I have no Natalia…it was not a success.  That was in 1989…I can still feel her tiny curls against my lips when I kissed her goodbye before the coffin was closed.

I want to make quilts for babies going through the same or other heart surgeries…try to oh I don’t know…cope with my loss…

sweet-baby-flannel-1-2009completed: January 3rd 2009

purpley-9-patch-1-2009

Completed: January 3rd 2009

http://thechdquilt.homestead.com 

The Congenital Heart Defect Awareness Quilt Project, Inc.

To promote greater public awareness of Congenital Heart Defects (CHD) and honor those born with Congenital Heart Defects.

 

 

 

Just the facts, mam’…

hlhs-lg-enlg

Ethical Principles and Parental Choice: Treatment Options for Neonates With Hypoplastic Left Heart Syndrome

 

 

Vicki L. Zeigler

Pediatr Nurs 29(1):65-69, 2003. © 2003 Jannetti Publications, Inc.

Posted 03/07/2003

Abstract and Introduction

Abstract

Nurses caring for children with congenital heart disease face unique challenges, especially when caring for neonates diagnosed with hypoplastic left heart syndrome (HLHS). The treatment options for these neonates present difficult choices for the child’s decision makers and are not without significant life-altering consequences. In order to assist in the decision-making process, nurses as patient and family advocates should acknowledge the unique role they play in the informed consent process, while simultaneously identifying specific ethical principles that are components of this process. By incorporating the principles of autonomy, beneficence, and veracity into specific nursing interventions, nurses can assist families in making informed decisions regarding a treatment option that is best for the child as well as the family.

Introduction

Children born with hypoplastic left heart syndrome (HLHS) place parents in difficult decision-making positions that will invariably change the course and often the quality of their lives as a family. The role of the professional nurse involves a commitment to “protect” patients as well as to promote health and decisionmaking in others (Mahon, 1988). Through contact with parents of critically-ill children, pediatric nurses are in a position to exert considerable influence on their treatment decisions (Bandman & Bandman, 2002); however, the nurse must respect the ethical principles of autonomy, beneficence, and veracity in order to remain cognizant of the obligation to respect parents as the ultimate decision makers.

Nurses caring for these neonates and their families play an important role in explaining and clarifying available treatment options in an effort to achieve a high level of informed consent. Inherent in this role is the ability of the nurse to recognize and, subsequently, utilize ethical principles associated with both informed consent and delivery of care. The purpose of this article is to assist nurses to identify these principles in order to use them in planning care when parents of neonates with HLHS are faced with choosing a treatment option for their child. The discussion will include a brief overview of HLHS and the currently available treatment options, ethical principles associated with informed parental choice (consent) of treatment options, and strategies for using these ethical principles to guide nursing interventions when caring for these children and their families.

HLHS

HLHS is a developmental cardiac malformation that involves the left ventricle, aorta, and the mitral valve (Lev, 1952; Noonan & Nadas, 1958). It is the fourth most common critical congenital heart defect and occurs in 0.267 per 1,000 live births (Ferencz et al., 1985). Without treatment, 95% of neonates diagnosed with HLHS will die within 1 month, with none surviving beyond 4 months of life (Stuart, Wren, & Staples, 1991). Due to the severity of the defect and the “time-sensitivity” of specific treatment modalities, an option must be chosen and initiated quickly.

The treatment options available for the neonate with HLHS include medical termination of pregnancy (if detected early enough); palliative care, also known as comfort care or compassionate care (Zahka, Spector, & Hanisch, 1993); cardiac transplantation; or three stages of surgical palliation to reconstruct the heart and its supporting vasculature. Medical termination of pregnancy is an option if the diagnosis has been made by fetal ultrasound or echocardiography prior to a gestational age of 6 months. Palliative care, initiated when parents opt not to pursue surgical treatment, results in the baby dying, usually within the first week of life. Cardiac transplantation offers a greater chance of survival if performed in the first month of life, while the first stage of surgical palliation (known as the Norwood procedure) must be performed within the first few days to weeks of life. Table 1 offers resources for each of the options. This article will address the three options the parents face when a live child is born.

Parents generally must choose one of three available treatment options for their child: palliative care (the initiation of pain and symptom management provided with dignity and compassion for the baby and cultural, spiritual, and practical support for the parents [Catlin & Carter, 2002]), cardiac transplantation, or three stages of reconstructive surgery. Each of these choices has advantages and disadvantages that must be considered in the decision-making process. While the options are being considered, the infant may be managed with mechanical ventilation and various medications commonly used to keep the infant alive such as prostaglandin E1. If palliative care is chosen, these treatments will be tapered off and pain and symptom management will be the focus of care. Pearson (1997) described palliative care for the non-viable infant in the hospital setting, recounting the parents’ wishes for a supportive team and a pain free death for their infant. Some parents may wish to take their infant home, and this is arranged with support from social services in conjunction with the local hospice team (Catlin & Carter, 2002).

Cardiac transplantation offers the advantage of providing the child with a structurally normal heart. Transplantation has been shown to be most successful when performed in the first month of life (Neglsen-Cannarella & Chang, 1992) with survival rates reported between 82% and 89% (Bailey & Gundry, 1990). Approximately 61% of children are alive at 1 year after transplant and 55% at 5 years (Jenkins et al., 2000). Although the organ recipient gains normal cardiac function if the transplant is successful, the child’s physical and social activities may be restricted. Fleisher and colleagues (2002) also found cognitive performance and other developmental benchmarks in children with heart transplants below that of normal children. One of the disadvantages of transplantation is the potential need to transfer the neonate to a transplant center, which often means the family must relocate as well. This move adds to the significant stress and financial constraints already faced by the family. Another disadvantage to transplantation is the life-long need to balance preventing rejection with immunosuppressive therapy against the risk of succumbing to infection. The shortage of donors presents a significant limitation as well. In a recent study comparing 1-year survival rates between patients undergoing transplantation versus the staged surgical reconstruction, 63% of patients in the transplant group died while waiting for a donor heart (Jenkins et al., 2000).

Staged surgical palliation offers benefits but with important limitations as well. More pediatric cardiac centers perform the Norwood procedure versus cardiac transplantation. Moreover, advances in surgical technique have improved survival rates for these children; however, surgical palliation presents several limitations. The first surgical stage, the Norwood procedure, may not be successful, and the hospitalization may be very prolonged while feeding and other medical issues are resolved. Recent data indicates that the majority of deaths occur in hospitalized children after Stage I of reconstruction, but survival increased significantly over the 15-year study period (Mahle, Spray, Wernovsky, Gaynor, & Clark, 2000). In addition, surgical complications may occur at any stage. Ultimately, after all three surgical procedures, the child will be left with single ventricle physiology and, as a result, limitations in physical activity. Studies also indicate that many of these children later exhibit significant neurocognitive and neurodevelopmental impairment (Mahle, Clancy, et al., 2000).

In summary, parents with a neonate with HLHS are faced with treatment choices that offer no “cure” for this serious heart defect. The consequences of each of these options must be weighed by the family in order for them to make the best decision for their individual situation. Unfortunately, often the health care team, so earnest in their desire to help save the child, does not always know or discuss with families the realities of these treatment options as well as the problematic future developmental sequelae The urgency of making a treatment decision may not allow for extended time to discuss these future realities, yet parents must be made aware of them in order to truly make an informed decision.

Ethical Principles Used to Guide Care

According to Flew (1999), the term ethics “suggests a set of standards by which a particular group or community decides to regulate its behavior” (p. 112). Rushton (2001) provides a more specific definition for ethics: “The study of the process for determining the best course of action in the face of conflicting choices” (p. 108). Given that nurses are an integral component of the health care system and participate in continuous interaction with the patient and family, ethics has emerged as a framework for guiding nursing care delivery. Since there are many ethical considerations to be taken into account when choosing a treatment option for the neonate with HLHS, nurses are able to make a valuable contribution to the knowledge base that is necessary for parents to make such a decision.

Although they have the authority and obligation to make a decision that is best for their child, parents with children in critical care units report experiencing numbness as they struggle to decide what is right for the child and what is right for the family (Anderson & Hall, 1995). Health care professionals must bear in mind that such decisions must be value-centered and determined on an individual basis, taking into account an individual’s personal, cultural, and religious values (Pierce, 1997). Nurses should remain cognizant of the benefits and burdens of a particular treatment option, along with the knowledge that decision making is more difficult when the outcome is less certain (Rushton, 2001).

The informed consent process has evolved over the years from a stance where health care professionals assumed they knew what was in the best interest of the patient and did not involve patients or families in health care decisions to a stance where it now demands that patients and families be given the needed information and then be allowed to make their own decisions. These decisions should be made voluntarily and free from coercion (Savage, 1997). Although the treating physician has the responsibility to provide a recommendation for care and obtain informed consent, the nurse plays a vital role in assuring that the parents are informed (Ariff & Groh, 1996). The specific role of the nurse in the process of informed consent according to Davis (1989) includes: (a) monitoring and coordinating the informed consent process, (b) being the patient’s advocate/liaison to the child’s physician, (c) explaining alternative treatments with provision of information regarding these alternatives, and (d) being a negotiator between patients and their families and physicians when there are differences of opinion.

Three ethical principles are involved in the process of parental choice and informed consent in the neonate with HLHS: autonomy, beneficence, and veracity. In order for the nurse to facilitate an informed treatment decision for the neonate’s parents, these principles should be incorporated into the overall plan of care. In assisting the parents in this process, the nurse needs to realize that caring for others requires consideration of one’s own values and contributions (Mayeroff, 1971), and that interactions with parents can provide data regarding the parental perceptions of their abilities and desires to cope with problematic situations (Bandman & Bandman, 2002).

Autonomy

Autonomy, the right of self-determination, implies that individuals have the right to information on the three available treatment options for their child. On the basis of this information or input, parents, subsequently, have the right to refuse treatment or to consent for one of the two surgical procedures. Beauchamp and Childress (2001b) state that the respect for autonomy is a professional obligation for the health care professional and is a right, not a duty, of patients and their families. In essence, autonomy means making a deliberate choice regarding a specific option.

If the neonate’s parents are to act autonomously, the nurse’s role should be to assure informedness by: (a) helping parents to understand the uncertainties of the disease and treatments in order to make a decision that is truly in the best interests of the child; (b) allowing parents the time and effort necessary to make a treatment decision, unless the child is in imminent danger of dying; (c) arranging for the availability of other health care team members, such as social services, clergy, and other ancillary services, for ongoing discussions; and (d) remembering that to accept or reject the recommended treatment options is the parent’s moral decision and is not the responsibility of the health care profession (Ariff & Groh, 1996).

Beneficence

Beneficence, the active doing of goodness or kindness, requires that the nurse act in ways to promote the patient’s (and family’s) welfare (Burkhardt & Nathaniel, 1998; Mappes & DeGrazia, 2002). This includes providing information regarding the specific beneficial aspects of a particular treatment modality as well as a risk (harm)/benefit ratio (Beauchamp & Childress, 2001a).

In order for the nurse to act in a beneficent manner, he or she must present the information regarding the treatment options and their associated risks and benefits, while remaining cognizant of his or her obligation to respect the parent’s decision. This can be especially difficult if the nurse should disagree with the treatment option chosen by the parents. The nurse, in a strictly advisory capacity, must show respect to the patient and family for their right to make informed health care decisions and should continue an ongoing needs assessment of the family. In order to make a decision that is truly in the child’s best interests, Ariff and Groh (1996) encourage nurses to help parents to realize that the course of the disease may be uncertain. Savage (1997) brings up several key points to be used by nurses when interacting with parents: (a) communicate clearly with both the parents and other members of the health care team, (b) inform parents of the decisions that must be made and in what specific time frame, (c) communicate any changes in the child’s condition that may potentially effect the treatment plans, (d) initiate referrals to appropriate resources that the family may need, and (e) remain cognizant of the fact that the parents are the ones who must live with their decision every day of their lives from this time forward (Savage, 1997).

Veracity

Veracity, or truth telling, in the health care environment refers to the transfer of information in a comprehensive, accurate, and objective manner, as well as the fostering of the patients’ and families’ understanding of the information (Beauchamp & Childress, 2001b). Veracity, which is closely tied to autonomy, is based on respect owed to others, fidelity and promise keeping, and trust (Beauchamp & Childress, 2001b). The cornerstone of the nurse-patient relationship is trust, especially in keeping with the philosophy of family-centered care.

Veracity in nursing care can be a double-edged sword in that being a patient advocate is not without risk and is directly influenced by the culture and norms of the nurse’s individual practice environment (Rushton, 2001). Predicting outcomes with any certainty is extremely difficult in children and even more so in newborns. Once the neonate has been admitted to the intensive care unit, some health care professionals believe that there is an obligation to use the available technology just because it is available (i.e., the technological imperative). Care must be taken to avoid exerting excessive influence for a particular treatment option on the parents. One report suggests that surgeons would perform surgery to save the child’s life regardless of the potential suffering or long-term complications of a chronic condition on the child and family (Bagwell & Goodwin, 1992).

Nursing Implications

In today’s health care environment, technological advancements have allowed the diagnosis of HLHS to be made prenatally in a number of cases (Brackley et al., 2000). In such cases, parents are able to consider all four treatment options, and if pregnancy continuation is opted, they have a longer period of time to evaluate the remaining three options. A difficulty arises when the diagnosis is made during the newborn period, and parents are required to make a nearly instantaneous decision without really having enough time to consider the risk/benefit ratio of each of the available treatment modalities. Additionally, little time is available for parents to grieve for the loss of a “normal” child. There is no time for coping with their emotions, and according to Swanson (1995), feelings of hope, anticipation, and excitement surrounding the baby’s birth are replaced by feelings of guilt, fear, anxiety, and uncertainty.

When attempting to make a timely treatment decision regarding their child, parents may become overwhelmed, angry, guilty, and ambivalent, in addition to suffering from acute moral conflicts. Because the recommendations given to them may be conflicting and the time in which a decision must be made is short and pressured, parents often turn to the nurse for support, advice, and assistance. According to Bandman and Bandman (2002), all of the factors relevant to the neonate’s capacities and potential as well as those of the families’ ability to cope with the problematic and often painful situation of having a child with special needs require careful consideration in making a final decision regarding a treatment option.

Informed consent requires that decision makers have the capacity to understand the information being presented regarding the treatment options and to give their consent voluntarily, without duress or fraud (Hogue, 1988). The parents may not initially comprehend many of the facts presented until the shock of having a child with a congenital heart defect has subsided. Due to the complexity of this defect and the timing of the diagnosis, health care professionals must remain aware of the power inequity that exists between parents and providers and that sometimes what is perceived as a lack of knowledge may actually be a discrepancy in values between health care team members and parents (Savage, 1997). Because the neonate is incapable of participating in the decision-making process, the nurse must advocate for the child by adequately and succinctly explaining all facets of each of the available treatment options to the parents. Nurses unfamiliar with the various procedures and outcomes for hypoplastic heart are used to seek out more knowledgeable colleagues and review the literature. Nurses must realize that the burden of choice lies with those who have accepted responsibility for making the decision and that as health care professionals, nurses will not see the lived experience of that choice. It is doubtful that nurses will ever know what it means to the family to have their lives changed so dramatically by choosing one option over another (Pierce, 1997).

In general, society expects parents to sacrifice everything for the child, yet parents are left on their own to find resources for their chronically ill child. Additionally, mothers are expected to provide care for the child 24 hours a day but, in many cases, must also maintain full time employment in order to have health insurance to provide for the child’s medical care. Bandman and Bandman (2002) recommend that the nurse share knowledge regarding the child’s estimated future care needs as well as provide any useful information gleaned from other parents facing similar demands. It is also important for parents to know that children with complex congenital anomalies can still bring happiness to their families and, despite their physical impairments or neurological deficits, still contribute to the family (Harms & Giordano, 1990).

In summary, having a child with HLHS poses extremely difficult choices for parents. Treatment decisions must be made in a timely manner and are not without ethical implications. Nurses can facilitate these decisions using ethical principles to guide nursing care. Although this article focuses on autonomy, beneficence, and veracity, the principles of equality and justice (the fair distribution of society’s resources) cannot be overlooked. In the United States, these surgical procedures are presently offered to children. This is not the case in every state and certainly not in many other countries. The provision of information regarding all treatment options in understandable language will help to promote informed decision making for patients and their families.

 

Located on the net…

In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.

The mitral and aortic valves are either completely “atretic” (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter.

This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body’s organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed.

Blood returning from the lungs to the left atrium must pass through an atrial septal defect (ASD) to the right side of the heart.

The right ventricle must then do a “double duty” of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)). The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.

Hypoplastic Left Heart Syndrome signs and symptoms

As mentioned above, infants with Hypoplastic Left Heart Syndrome can develop life-threatening shock when the ducutus arteriosus begins to close. In most cases, however, the ductus arteriosus is widely open at the time of birth, supplying the blood flow to the body and babies may not be diagnosed right away. As the ductus arteriosus closes, which it typically will in most infants in the first hours or days of life, the perfusion to the body is seriously diminished and shock rapidly ensues.

Newborns with Hypoplastic Left Heart Syndrome will typically have lower-than-normal oxygen saturations. This is because all of the blood from the lungs (the oxygenated “red” blood) mixes together in the single right ventricle before being pumped out of the lungs and body. Cyanosis, therefore, may be the first clue to the presence of a serious underlying cardiac condition. Respiratory distress (difficult or fast breathing) is often present because the lungs will tend to receive an excessively large amount of blood flow. There is often no or just a faint murmur present in newborns with Hypoplastic Left Heart Syndrome.

The pulses may be very weak in all extremities on examination depending on flow through the ducturs arteriosus. Lethargy, poor feeding, and worsening respiratory distress may be seen as the ducturs arteriosus closes. Ultimately, severe shock resulting in seizures, renal failure, liver failure, and worsening cardiac function may develop. Whether these problems are reversible depends on both the severity and the duration of shock.

How Hypoplastic Left Heart Syndrome is diagnosed

This heart defect is one of the most readily diagnosed on fetal echocardiograms and is one of the most common cardiac defects picked up on screening obstetrical ultrasounds. Such early diagnosis of the anomaly allows for prompt intervention for stabilization at the time of birth so that severe shock may be avoided.

Planning to deliver such an infant at a hospital capable of aggressive newborn resuscitation is important in improving the chances for a good outcome.

Echocardiography is the principal method of diagnosing Hypoplastic Left Heart Syndrome. It can give detailed information of the anatomy of the various cardiac structures affected in Hypoplastic Left Heart Syndrome, as well as important information about the function of the right ventricle and its valves the size of the atrial septal defect (important for blood mixing) and the size of the patent ductus arteriosus.

Cardiac catheterization is almost never needed for newborns with this heart defect as part of the initial evaluation due to the high risks in an often unstable newborn. Catheterization, though, does play an important role in the evaluation of the cardiopulmonary function and anatomy in older children with Hypoplastic Left Heart Syndrome while planning for later stages in the treatment.

Hypoplastic Left Syndrome treatment

Treatment Options

Managing this condition depends on the family’s wishes and the severity of the condition. Once the diagnosis is made, a number of things are done. First, a medicine called prostaglandin is started to prevent the ductus arteriosus from closing. A ventilator may be used to help with breathing. Intravenous fluids are started and medicines to help the heart beat stronger often are used. This will help stabilize the baby while decisions are made regarding treatment.

Three-stage surgical procedure

A three-stage surgical procedure is an option for some babies. The operation reconstructs the child’s heart so that the single pumping chamber can meet the patient’s needs for the rest of his or her life. The first operation is performed in the first week of life The second operation is performed around 6 months and the third operation is performed when the child is 18 to 48 months. Completion of these operations allows separation of the blue blood (blood without oxygen) from the red blood (blood with oxygen).

  • Stage one operation
    The first stage is called the Norwood Procedure. Because the left ventricle cannot pump blood adequately to the body, the Norwood procedure allows the right ventricle to pump blood to both the lungs and the body. The procedure involves reconstructing the aortic arch (the main blood vessel supplying blood to the body) and inserting a tube that connects the aorta to the pulmonary artery (the blood vessel which supplies blood to the lungs). This operation needs to be done soon after the diagnosis is made. The baby will still look blue (cyanotic), after this first-stage operation.
  • Stage two operation
    The second operation, called the bidirectional Glenn procedure or hemi-Fontan, reduces the work of the right ventricle by allowing it to pump blood only to the body, and allowing most of the blood to flow directly from the body into the lungs. After this operation is performed, all the blood coming from the upper body is sent to the lungs so more blood with oxygen is coming back from the lungs to the left side of the heart.
  • Stage three operation
    The third and final operation, called the
    Fontan procedure, allows the rest of the blood coming back from the body to go to the lungs. Now there is no mixing of blood with oxygen and blood without oxygen in the child’s heart. After this operation, the child will no longer look blue. With more oxygen-rich blood going to the body, the child’s general health and growth will improve.

Results with staged reconstruction for children with Hypoplastic Left Heart Syndrome / Norwood operation

The Norwood operation is the most complex and highest risk procedure in the sequence of staged reconstruction for Hypoplastic Left Heart Syndrome. Current management at major pediatric heart centers has resulted in survival rates of 75 percent or better.

The recovery period in the hospital following the Norwood operation is often unpredictable and complicated, averaging about 3 to 4 weeks. A small percentage of patients who leave the hospital may continue to experience significant problems in the first months of life.

Occasionally, the right ventricle does not function well following the Norwood operation and in some case, cardiac transplantation may need to be considered.

If a child with Hypoplastic Left Heart Syndrome reaches the time for the second stage (about 4 to 6 months of age) without major complications, the survival through the Glenn and Fontan operations are much better, exceeding 90 percent with current methods.

  • Almost all children with Hypoplastic Left Heart Syndrome will continue to need some cardiac medications to maximize the efficient function of their heart, and all will require regular periodic follow-up visits with their cardiologist to evaluate their cardiac function and detect late complications such as arrhythmias.

Heart transplant

Babies with HLHS can be put on a list to receive a heart transplant. When the baby’s name is at the top of the list, he or she will receive a healthy donor heart. To fight against rejection of the new heart, transplant patients need to take anti-rejection medications for the rest of their lives. The baby is kept on prostaglandin until a donor heart becomes available, and then a transplant has to be performed at a center like Mayo Clinic which is staffed and equipped to perform heart transplants in newborn infants.

Follow up

Long-term follow-up is needed to monitor the function of the reconstructed heart and blood vessels. The infant/child may need ongoing treatment with cardiac medications. During office visits the function of the child’s heart can be monitored with echocardiography, an ultrasound to check the heart pump function and the blood vessel as the child grows and develops. Two heart catheterizations are typically performed over the first 2 years, usually just before each of the next 2 surgical stages, after the initial Norwood procedure.

In a heart catheterization, soft, thin plastic tubes (catheters) are placed in the large blood vessels in the leg and threaded carefully to the heart. The catheters are used to take pressure measurements inside the heart and to inject contrast or dye so pictures of the heart can be taken. Overall, this is a very safe test and children can go home the same day.

2 comments on “HLHS ~ Natalia

  1. But I disagree…I only got to love and hold her for 29 days…I can’t imagine loving and holding her for 20 years and having her taken so suddenly…lets face it as mom’s we’re NEVER prepared to loose a child…massive hugs back to you Teresa!

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